tag:blogger.com,1999:blog-2130419846190430612024-03-13T16:46:45.667+00:00Rumer's RainbowTrisomy 18 Info UKHelenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.comBlogger60125tag:blogger.com,1999:blog-213041984619043061.post-39338847031090959182018-03-07T15:00:00.000+00:002019-07-11T02:44:10.273+01:00Complaint about Rumer’s care, part 5<!-- POST BODY STARTS --><!-- POST SUBTITLE --><h3 class=postsubtitle>Pregnancy 2</h3><!-- SHARE BUTTONS (top) --><div class=addthis_inline_share_toolbox_3kw8></div><!-- Desktop --><div class=addthis_inline_share_toolbox_hdjj></div><!-- Mobile --><!-- POST TOC --><div class=post-toc><details><summary class=pp-toc_title><div></div></summary><ul class=pp-toc_list><li class=pp-toc_item_begin><a href=#article-start title="Go to beginning of article"><span></span></a><li><details><summary class=pp-toc_item_h5><a href=#text-box_pregnancy_2 title="Go here">PREGNANCY 2: Failure to consider all care management options</a></summary><ul><li class=pp-toc_item_h6><a href=#pregnancy_2_in-summary title="Go here">In summary</a><li class=pp-toc_item_h6><a href=#pregnancy_2_we-would-like title="Go here">We would like</a></ul></details></ul></details></div><!-- POST TEXT --><!-- Text box (style 1) - Blockquote - PREGNANCY 2: FAILURE TO CONSIDER ALL CARE MANAGEMENT OPTIONS --><div class="tb-s1_full-width tb_blockquote"><div class=tb-s1_type-label id=text-box_pregnancy_2><span id=article-start></span></div><div class=tb-s1_title><h4><cite>Concerns about the care of Rumer Gomez</cite></h4><h5><b>Pregnancy</b> 2: Failure to consider all care management options</h5></div><blockquote class="carc-doc_main tb-s1_text" id=pregnancy_2><h5><span class=subsection-no>2.</span>Failure to consider all care management options</h5><p id=pregnancy_2_intro>From soon after diagnosis, we felt there was an unwritten policy about how babies with trisomy 18 should be managed, which seemed to be that there should be no invasive interventions, and no treatment given for the purpose of prolonging their lives. This unofficial policy precluded open discussion about any alternative approaches. Other options were never mentioned by medical staff, and when we brought them up, they were usually dismissed or deflected. Thus we felt strongly pushed down a <q class=q_single>palliative care only</q> pathway, and that we were not supported in making informed choices for our daughter’s care.</p><a name='more'></a><ol class=subsection-list><li id=pregnancy_2a>When trying to arrange our first appointment with <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Neonatology</span><span class=tt-s1_tooltip><span class=tt-s1_title>Neonatology</span><span class=tt-s1_text>See <a href=/p/whos-who.html#nnu title="Who’s Who entry">Neonatal Unit</a></span></span></span>, we were instead offered an appointment with <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Palliative Care</span><span class=tt-s1_tooltip><span class=tt-s1_title>Palliative Care</span><span class=tt-s1_text>See <a href=/p/whos-who.html#paediatric-palliative-care-team title="Who’s Who entry">Paediatric Palliative Care Team</a></span></span></span>. When we insisted that we wanted an appointment with Neonatology, the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>FMU</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>FMU</abbr></span><span class=tt-s1_text>See <a href=/p/whos-who.html#fmu title="Who’s Who entry">Fetal Medicine Unit</a></span></span></span> midwife who was responsible for arranging the appointments replied, <q class=q_double>Palliative Care is much more important.</q> This turned out to be illustrative of the attitude across most of the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Trust</span><span class=tt-s1_tooltip><span class=tt-s1_title>Trust</span><span class=tt-s1_text>See <a href=/p/whos-who.html#clht title="Who’s Who entry">Central London Hospital NHS Foundation Trust</a> (pseudonym)</span></span></span>, and was both inappropriate and offensive to a family with a new diagnosis of trisomy 18 which had not yet had the opportunity to decide on an approach to management.<li id=pregnancy_2b>In the end, our first meeting with Neonatology was held jointly with the Palliative Care team. While there is undoubtedly a role for joint meetings in many circumstances, this was expressly against our wishes (we were unable to rearrange the appointment since we only learned of it 20 minutes before the appointment was due to start). Holding the two meetings together was inappropriate as we were unable to engage fully with either team, with the resulting conversations being held at too superficial a level to enable us to explore all options.<li id=pregnancy_2c>In this first meeting, when we brought up higher-level treatment options (such as <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">full resuscitation at birth</span><span class="tt-s1_tooltip tt_btm tt_mob_defpos"><span class=tt-s1_title>Full resuscitation at birth</span><span class=tt-s1_text><span class=tt-s1_text_para>When a baby is born not breathing, there is a Resuscitation Council <a href=https://www.resus.org.uk/resuscitation-guidelines/resuscitation-and-support-of-transition-of-babies-at-birth/#suggested title="Resuscitation Council (UK) guideline – Resuscitation and support of transition of babies at birth – Suggested sequence of actions">protocol</a> that is normally followed.</span><span class=tt-s1_text_para>As with most treatments, there are differing opinions about whether any, some or all of this protocol should be followed when a baby with trisomy 18 is born not breathing: this was what we wanted to discuss.</span></span></span></span>, <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>active management</dfn></span><span class="tt-s1_tooltip tt_btm tt_mob_defpos"><span class=tt-s1_title>Active management</span><span class=tt-s1_text><span class=tt-s1_text_para>Refers to treatment intended to cure or improve the underlying issue.</span><span class=tt-s1_text_para>With regard to <i>apnoeas</i> (see next tooltip), this treatment would depend on the cause, but it may include the use of oxygen, anti-epileptic drugs, surgery such as trimming adenoids, <a href=/2016/03/nicu-basics-respiratory-support.html#cpap title="NICU Basics: Respiratory support – Continuous Positiave Airway Pressure (CPAP)"><abbr>CPAP</abbr></a> during the night or <b>long-term <a href=/2016/03/nicu-basics-respiratory-support.html#intubation-and-mechanical-ventilation title="NICU Basics: Respiratory support – Intubation and Mechanical Ventilation">ventilation</a></b> through a <a href=http://www.gosh.nhs.uk/medical-information-0/procedures-and-treatments/living-tracheostomy title="Great Ormond Street Hospital for Children information page – Living with a tracheostomy">tracheostomy</a>.</span></span></span></span> of <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>apnoea</dfn></span><span class="tt-s1_tooltip tt_btm tt_mob_defpos"><span class=tt-s1_title>Apnoea</span><span class=tt-s1_text><span class=tt-s1_text_para>Term for when someone stops breathing, usually for one of three reasons: <dfn>obstructive apnoeas</dfn> occur because something gets in the way<span class=dash_norm></span>for example floppy airways collapse<span class=dash_norm></span>and <dfn>central apnoeas</dfn> are the result of the brain <q class=q_generic>forgetting</q> to breathe. The third type is one caused by a seizure.</span><span class=tt-s1_text_para>Apnoeas are common in babies with trisomy 18. Historically, it had long been assumed that they were always centrally caused. However, we had found research that suggested that a lot were obstructive, and seizures were also far from uncommon.</span><span class=tt-s1_text_para>Apnoeas which are not dealt with for whatever reason are a common cause of death for babies with trisomy 18.</span></span></span></span>, etc) we found that the professionals were generally unwilling to engage, instead deflecting the conversation. For example:<ol><li id=pregnancy_2c-i>When Helen brought up resuscitation options at birth, the neonatal consultant (<b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Ida Leigh</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#ida-leigh title="Who’s Who entry">neonatologist</a> who initially served as Rumer’s named consultant</span></span></b>) interrupted to talk about her job.<li id=pregnancy_2c-ii>When Chris was discussing our thoughts about what general approach we might want to take with regard to Rumer’s care, again she interrupted. He clarified that he wanted to continue with the point, but she carried on and diverted the conversation to talk about Rumer’s name.<li id=pregnancy_2c-iii>While we were discussing the risks and benefits of surgical options for Rumer, the Palliative Care consultant (<b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Tegan Blackman</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for Rumer’s <a href=/p/whos-who.html#tegan-blackman title="Who’s Who entry">Palliative Care consultant</a></span></span></b>) deflected the conversation into talking about the option of going to the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">hospice</span><span class=tt-s1_tooltip><span class=tt-s1_title>Hospice</span><span class=tt-s1_text>See <a href=/p/whos-who.html#blue-skies-childrens-hospice title="Who’s Who entry">Blue Skies Children’s Hospice</a> (pseudonym)</span></span></span> in the event of Rumer’s death. While this was something we wanted to talk about with her, it was not appropriate at that time as it meant discontinuing an important conversation about treatment options.<li id=pregnancy_2c-iv>There was a repeated pattern of similar interruptions throughout the meeting. It was, and is, difficult to see this as anything other than an unwillingness to discuss all of the potential treatment options for Rumer with us.</ol><li id=pregnancy_2d>A number of statements were made during meetings with both the Neonatal and Palliative Care teams which strongly implied that there existed in the Trust an unwritten policy that only palliative care would be provided to babies with a diagnosis of trisomy 18. This <q class=q_single>policy</q> made discussions of other options challenging at best. Although the existence of such a policy was denied by various staff, it is hard to reconcile this with some of the statements that were made to us by – often – the same members of staff. For example:<ol><li id=pregnancy_2d-i>During the same initial appointment with Neonatology and Palliative Care, Dr <b class=alter_own>Leigh</b> stated that <q class=q_double>we don’t operate on babies with trisomy 18 as a Trust</q>.<li id=pregnancy_2d-ii>Again during the first appointment, Dr <b class=alter_own>Leigh</b> brought up the subject of <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>intubation and ventilation</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Intubation and ventilation</span><span class=tt-s1_text>A high-level type of <a href=/2016/03/nicu-basics-respiratory-support.html#intubation-and-mechanical-ventilation title="NICU Basics: Respiratory support – Intubation and Mechanical Ventilation">breathing support</a> in which a breathing tube is inserted in the patient’s windpipe through which a machine provides <q class=q_generic>breaths</q> directly into their lungs.</span></span></span>, but said that <q class=q_double>for a baby with Edwards’ syndrome, we don’t do that here</q>. This was reinforced during our second appointment with Dr <b class=alter_own>Leigh</b> (on 21<sup>st</sup> July 2015) when, asked about intubation for a baby with trisomy 18, she said: <q class=q_double>Some mavericks would, especially in the US, but we wouldn’t, I wouldn’t.</q><li id=pregnancy_2d-iii>At the second appointment with Palliative Care, on 20<sup>th</sup> July 2015, Dr <b class=alter_own>Blackman</b> specifically recommended against the use of an <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>apnoea monitor</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Apnoea monitor</span><span class=tt-s1_text>A piece of equipment that aims to sound an alarm when an apnoea is suspected. It usually takes the form of a mat, which is placed under the baby’s mattress, connected to a small monitor which alarms after a set period of time during which no breathing movement is detected.</span></span></span>, because <q class=q_double>you don’t want to turn your house into an intensive care unit</q>. She went on to say that, in trisomy 18 cases in her experience, <q class=q_double>usually the first apnoea that parents notice is the one that kills the baby</q>. This hardly seems surprising given that monitoring for apnoeas is discouraged in this way!<li id=pregnancy_2d-iv>At the 21<sup>st</sup> July neonatal appointment, Helen asked Dr <b class=alter_own>Leigh</b> how she would manage a baby with trisomy 18 who had been intubated prior to diagnosis. Dr <b class=alter_own>Leigh</b> said that she would confirm the diagnosis and withdraw ventilation. Helen pointed out that it would be difficult to withdraw ventilation in the absence of parental consent. Dr <b class=alter_own>Leigh</b> then countered with an account of a baby recently admitted to the neonatal unit in this position, who after diagnosis <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>self-extubated</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Self-extubation</span><span class=tt-s1_text>Sometimes an intubated baby pulls their breathing tube out, or moves in such a way that it becomes dislodged: this is called self-extubation.</span></span></span>. Dr <b class=alter_own>Leigh</b> stated that she did not reintubate the baby. Chris queried whether she <q class=q_double>had the parents’ blessing</q>. Dr <b class=alter_own>Leigh</b> felt that <q class=q_single>blessing</q> was a <q class=q_double>very strong term</q>, so Chris substituted <q class=q_single>agreement</q>. Dr <b class=alter_own>Leigh</b> considered this for a minute before saying, <q class=q_double>I think we can say...assent.</q> This story concerned us greatly as it implied that the policy against active treatment in the neonatal unit was so strong that physicians would withdraw treatment, without the parents’ consent, purely on the basis of a trisomy 18 diagnosis.</ol><li id=pregnancy_2e>Repeated statements that care was given on an individualised basis and that there was no such policy were hardly reassuring in the face of multiple comments similar to the examples given above. This was especially true when such reassurances were given in the same conversations as the comments that clearly described a policy of <q class=q_single>palliative care only</q>.<li id=pregnancy_2f>Between our initial (2<sup>nd</sup> July) and second (21<sup>st</sup> July) appointments with Dr <b class=alter_own>Leigh</b>, the majority of the neonatal consultants had met and devised a care plan for Rumer, which was circulated by email (see <a href=/2018/02/complaint-part-4.html#text-box_appendix-5 title="Go here">Appendix 5</a>, page A‑15). This plan was generated before we’d had detailed discussions with the neonatal team about our wishes and assumed a <q class=q_single>palliative care only</q> approach.<li id=pregnancy_2g>On 29<sup>th</sup> July, <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Khushi Holloway</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#khushi-holloway title="Who’s Who entry">Consultant Midwife</a> who became closely involved with Helen’s midwifery care</span></span></b> (Consultant Midwife) devised and circulated a birth plan which, again, assumed a <q class=q_single>palliative care only</q> approach, including the denial of a caesarean section in any circumstances other than maternal need (<a href=/2018/02/complaint-part-4.html#text-box_appendix-6 title="Go here">Appendix 6</a>, page A‑17).</ol><h6 id=pregnancy_2_in-summary>In summary</h6><p id=pregnancy_2_in-summary_para-1>There was a lack of willingness to discuss all possible approaches to the management of Rumer’s care. The team routinely refused to engage in discussions around active management, even when we repeatedly initiated them. There seemed to be a <q class=q_single>palliative care only</q> policy regarding the management of babies with trisomy 18 that would be implemented regardless of parental wishes.<p id=pregnancy_2_in-summary_para-2>There was no attempt to provide informed choice for us, and there were assumptions about what our wishes <q class=q_single>should</q> be. Rather than acknowledging the different opinions as to the approach to be taken and managing this, the team preferred to proceed as if there was no disagreement. The production and circulation of <q class=q_single>palliative care only</q> plans for Rumer’s care, made without our involvement or even knowledge, is particularly unacceptable.<p id=pregnancy_2_in-summary_para-3>The lack of engagement and assumptions about care management approach meant that we were, and continue to be, unable to trust the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>multi-disciplinary team</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Multi-disciplinary team</span><span class=tt-s1_text>Refers to a group of professionals with different areas of expertise who are working collaboratively on a case.</span></span></span>. This led to increasingly challenging relationships between ourselves and the hospital teams.<h6 id=pregnancy_2_we-would-like>We would like:</h6><ul class=we-would-like_list><li id=pregnancy_2_we_would-like_1>An acknowledgement that care-planning for babies without fully informing and involving parents is no longer an acceptable practice.<li id=pregnancy_2_we_would-like_2>An apology for the failure to provide full information about all the options and to fully involve us in the decisions about the care to be provided to Rumer.<li id=pregnancy_2_we_would-like_3>An acknowledgement that widely circulating care plans that have not yet been discussed and agreed with parents is not acceptable and should not have happened.<li id=pregnancy_2_we_would-like_4>An assurance that future parents with a prenatal diagnosis of trisomy 18 will be:<ul><li id=pregnancy_2_we_would-like_4a>informed of all care management approaches, including the potential use of active treatment options such as intubation and surgeries where relevant<li id=pregnancy_2_we_would-like_4b>fully involved in decision-making about their child’s care</ul><li id=pregnancy_2_we_would-like_5>An assurance that the Trust will produce a policy in order to guide health professionals in having these detailed discussions with parents who have a prenatal diagnosis of trisomy 18 (or similar conditions). This will ensure consistency, and that all parents will be given full information.</ul><div class=we-would-like_master-list-pointer>See <a href=/2018/02/complaint-part-3.html#text-box_appendix-2 title="Go here">Appendix 2</a> (page A‑7) for an amalgamated list of outcomes we would like.</div></blockquote></div><!-- SHARE BUTTONS (bottom) --><div class=sharethis_postbottom></div><!-- Both --><div class=addthis_inline_share_toolbox_dkmm></div><!-- Desktop --><div class=addthis_inline_share_toolbox_dkmm_dc83></div><!-- Mobile --><!-- SERIES NAVIGATION FOOTER --><div class="series-nav sn_wrapper_outer"><div class=sn_wrapper_inner><span class=sn_prev><a href=/2018/02/complaint-part-4.html title="Go to previous part">4</a> </span><span class=sn_ref><a href=/p/complaint.html title="Contents page listing all parts in the series"></a> <span class=sn_separator></span> <a href=/p/whos-who.html title="List of people and organisations mentioned, with brief descriptions"></a> </span><span class="hidden sn_next"><a href=/[[year]]/[[month]]/complaint-part-6.html title="Go to next part">6</a></span></div></div><!-- POST BODY ENDS -->Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-85503986824947400732018-02-16T16:28:00.000+00:002019-07-11T02:43:15.002+01:00Complaint about Rumer’s care, part 4<!-- POST BODY STARTS --><!-- POST CSS --><style scoped>#appendix-3 .eml_salutation,#appendix-3 .eml_signoff,#appendix-3 .eml_signoff_name,#appendix-3 p{margin:0}#appendix-4 .eml_signoff_name{margin:0}#appendix-5 h4{display:block;margin:1.3em 0;padding:0;border-style:none;font-family:inherit;font-size:inherit;font-weight:700;font-style:normal;text-decoration:none;text-align:left}#appendix-5 .eml_body ul{margin:-1.3em 0 1.3em;padding:0;list-style-type:none}#appendix-5 .eml_body ul li{margin:0;padding:0}#appendix-5 .eml_body ul li::before{content:"- "}#appendix-5 .eml_signoff_name{margin:0}#appendix-6_list{margin:2.6em 0 1.3em 2.8em;padding:0}#appendix-6_list li{margin:0;padding:0 0 0 .8em}.mobile #appendix-6_list{margin-left:2.2em}.mobile #appendix-6_list li{padding-left:.5em}</style><!-- POST SUBTITLE --><h3 class=postsubtitle>Pregnancy 1 & Appendices 3<span class=dash_range></span>6</h3><!-- SHARE BUTTONS (top) --><div class=addthis_inline_share_toolbox_3kw8></div><!-- Desktop --><div class=addthis_inline_share_toolbox_hdjj></div><!-- Mobile --><!-- POST TOC --><div class=post-toc><details><summary class=pp-toc_title><div></div></summary><ul class=pp-toc_list><li class=pp-toc_item_begin><a href=#article-start title="Go to beginning of article"><span></span></a><li><details><summary class=pp-toc_item_h4><a href=#text-box_pregnancy_1 title="Go here">PREGNANCY 1: Delays in care-planning</a></summary><ul><li class=pp-toc_item_h6><a href=#pregnancy_1_in-summary title="Go here">In summary</a><li class=pp-toc_item_h6><a href=#pregnancy_1_we-would-like title="Go here">We would like</a></ul></details><li class=pp-toc_item_h4><a href=#text-box_appendix-3 title="Go here">APPENDIX 3: [George Donnachie] email<span class=dash_norm_formal></span>Request to delay multidisciplinary meeting (03 Jul 2015)</a><li class=pp-toc_item_h4><a href=#text-box_appendix-4 title="Go here">APPENDIX 4: Our email<span class=dash_norm_formal></span>Professionals to see (11 Jun 2015)</a><li><details><summary class=pp-toc_item_h4><a href=#text-box_appendix-5 title="Go here">APPENDIX 5: [Ida Leigh] email<span class=dash_norm_formal></span>Initial neonatal care plan (14 Jul 2015)</a></summary><ul><li class=pp-toc_item_h4><a href=#appendix-5_term-birth title="Go here">Term birth</a><li class=pp-toc_item_h4><a href=#appendix-5_preterm-birth title="Go here">Preterm birth</a><li class=pp-toc_item_h4><a href=#appendix-5_further-action-planned title="Go here">Further action planned</a></ul></details><li class=pp-toc_item_h4><a href=#text-box_appendix-6 title="Go here">APPENDIX 6: [Khushi Holloway] email<span class=dash_norm_formal></span>Provisional obstetic/midwifery care plan (29 Jul 2015)</a></ul></details></div><!-- POST TEXT --><!-- Text box (style 1) - Blockquote - PREGNANCY 1: DELAYS IN CARE-PLANNING --><div class="tb_blockquote tb-s1_full-width"><div class=tb-s1_type-label id=text-box_pregnancy_1><span id=article-start></span></div><div class=tb-s1_title><h4><cite>Concerns about the care of Rumer Gomez</cite></h4><h5><b>Pregnancy</b> 1: Delays in care-planning</h5></div><blockquote class="tb-s1_text carc-doc_main"><h4 id=pregnancy>Pregnancy</h4><h5 id=pregnancy_1><span class=subsection-no>1.</span>Delays in care-planning</h5><p id=pregnancy_1_intro>This was a common theme throughout the antenatal period, in which we found significant difficulties in accessing some specialisms, notably <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Neonatology</span><span class=tt-s1_tooltip><span class=tt-s1_title>Neonatology</span><span class=tt-s1_text>See <a href=/p/whos-who.html#nnu title="Who’s Who entry">Neonatal Unit</a> Who’s Who entry</span></span></span>. Additionally, some professionals were keen to delay care-planning discussions until later in the pregnancy, despite this being against our clearly expressed wishes and having a potentially negative impact on Rumer’s care.</p><a name='more'></a><ol class=subsection-list><li id=pregnancy_1a>It was important to us to have a proposed care plan in place relatively early, because of the high risk of prematurity associated with trisomy 18; we needed an agreed care plan in place before Rumer was born. In addition, we knew that parents who opted for active treatment often met with opposition and we needed time to negotiate with <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>CLH</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Abbreviation for <a href=/p/whos-who.html#clh title="Who’s Who entry">Central London Hospital</a>, the pseudonym for the adult hospital that provided Helen’s maternity care</span></span></b>/<b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>London Paeds</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Abbreviation for <a href=/p/whos-who.html#london-paeds title="Who’s Who entry">London Paediatric Hospital</a>, the pseudonym for the children’s hospital that provided the vast majority of Rumer’s care</span></span></b>, and if this was unsuccessful, to explore our options elsewhere. However, there was an unwillingness to commit to any care plan. In the end, even agreement about principles of neonatal care was only reached after 33 weeks gestation, which left us with very limited time. Physicians wanted to delay discussions until late pregnancy due to the risk of stillbirth. Dr <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">George Donnachie</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#george-donnachie title="Who’s Who entry">Fetal Medicine & Obstetric consultant</a></span></span></b> stated in his email of 3<sup>rd</sup> July 2015 (<a href=#text-box_appendix-3 title="Go here">Appendix 3</a>, page A‑13) that a planned multi-disciplinary meeting should be delayed until 34 weeks gestation. Other clinicians concurred that discussion of neonatal care should be delayed until this time.<li id=pregnancy_1b>Accessing the Neonatal team in order to discuss care options was challenging. We requested an appointment with them shortly after diagnosis (see <a href=#text-box_appendix-4 title="Go here">Appendix 4</a>, page A‑14). While this was less urgent than some of the other appointments requested, it was one of the most important meetings. After three weeks, we contacted the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>FMU</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title>Fetal Medicine Unit</span><span class=tt-s1_text><a href=/p/whos-who.html#fmu title="Who’s Who entry – Fetal Medicine Unit">Who’s Who entry</a></span></span></span> midwife team to enquire about what was happening. We left two messages on the voicemail but received no reply. Eventually, we were contacted by <abbr>FMU</abbr> midwife <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Elysia Crouch</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#elysia-crouch title="Who’s Who entry">midwife</a> who served as our link to the Fetal Medicine Unit</span></span></b> about another matter and requested that the neonatal appointment was arranged. We were then offered an appointment with the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Paediatric Palliative Care team</span><span class=tt-s1_tooltip><span class=tt-s1_title>Paediatric Palliative Care Team</span><span class=tt-s1_text><a href=/p/whos-who.html#paediatric-palliative-care-team title="Who’s Who entry – Paediatric Palliative Care Team">Who’s Who entry</a></span></span></span>. After we stressed the importance of the neonatal appointment, we were offered an appointment on the same day.<li id=pregnancy_1c>After meeting the Neonatal team, the consultant we saw (Dr <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Ida Leigh</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#ida-leigh title="Who’s Who entry">Neonatologist</a> who initially served as Rumer’s named consultant</span></span></b>) said that she would arrange a second appointment in order to progress our discussion. She refused to give contact details for herself or the Neonatal department, saying that we should instead contact them via Palliative Care. When we did not hear from her, we attempted to chase up the appointment both through Palliative Care and via other departments. She then contacted us to arrange the appointment.<li id=pregnancy_1d>When we attended the second Neonatal appointment on 21<sup>st</sup> July 2015, Dr <b class=alter_own>Leigh</b> informed us that she had not yet spoken to all of her fellow consultants, and they did not yet have a consensus and therefore she could not describe the care that the unit would or wouldn’t feel able to offer to Rumer. We have since discovered that in fact the Neonatal consultant team had met on 14<sup>th</sup> July and agreed a detailed provisional care plan (see <a href=#text-box_appendix-5 title="Go here">Appendix 5</a>, page A‑15). We would have been in strong opposition to this care plan, but were never told about it and therefore did not have the opportunity to discuss or challenge it in any way, or to seek alternative options if needed.<li id=pregnancy_1e><p id=pregnancy_1e_para-1>On 29<sup>th</sup> July, a provisional obstetric/midwifery care plan was also devised and circulated by Consultant Midwife <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Khushi Holloway</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#khushi-holloway title="Who’s Who entry">Consultant Midwife</a> who oversaw the midwifery aspects of Helen’s care</span></span></b> (<a href=#text-box_appendix-6 title="Go here">Appendix 6</a>, page A‑17). This too was against our clearly-expressed wishes, and again we were never informed of it or given the opportunity to discuss or challenge it.<p id=pregnancy_1e_para-2>See <b>Overall</b> point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_2d-i" title="Go here" class=non-existent>2.d)i</a><span class=temp>2.d)i</span> below, page 64, for details.<li id=pregnancy_1f>During the 21<sup>st</sup> July Neonatal appointment, it was agreed that second opinions would be arranged from <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">The Simms Hospital</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for one of the <a href=/p/whos-who.html#the-simms-hospital title="Who’s Who entry">hospitals</a> from which a second opinion was arranged</span></span></b> and <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">St. Sebastian’s Hospital</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for one of the <a href=/p/whos-who.html#sebs title="Who’s Who entry">hospitals</a> from which a second opinion was arranged</span></span></b>. There were significant delays in arranging the second opinions, so that they didn’t happen until we’d already reached agreement with <b class=alter_own><abbr>CLH</abbr></b>/<b class=alter_own><abbr>London Paeds</abbr></b>, which rendered the opinions pointless and a waste of time for all concerned. We also weren’t informed of the appointment at <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Seb’s</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Abbreviation for St. Sebastian’s Hospital</span></span></b>, finding out about it only coincidentally on the morning of the appointment.</ol><h6 id=pregnancy_1_in-summary>In summary</h6><p>Decisions about care were routinely delayed, as was the communication of the eventual plans to us. Had Rumer been born prematurely, a major risk for babies with trisomy 18, both we and the care team would have been placed in an extremely difficult situation, with the possibility of needing to seek emergency court orders due to disagreements about what treatment was in Rumer’s best interests. Timely care-planning would have avoided this risk. Delays in care-planning also took up significant time and caused an enormous amount of undue stress for us during the pregnancy. This time would have been better used to benefit Rumer in other ways.<h6 id=pregnancy_1_we-would-like>We would like:</h6><ul class=we-would-like_list><li id=pregnancy_1_we-would-like_1>An acknowledgement that care-planning and discussion of proposed care plans were delayed, leading to the risks of conflict/disagreement, ill-considered treatment or an inappropriate decision not to treat had Rumer been born prematurely. This was not in her best interests and had a negative impact on our experience of pregnancy.<li id=pregnancy_1_we-would-like_2>An undertaking that <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Central London Hospital NHS Foundation Trust</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#clht title="Who’s Who entry">hospital trust</a> that managed the hospitals that provided Rumer’s and Helen’s care</span></span></b> will commit to providing timely care-planning to all families in similar situations, in order to reduce parental stress and ensure that sufficient time is allowed for all parties to consider and discuss the care that is to be provided to newborns with an antenatal diagnosis.</ul><div class=we-would-like_master-list-pointer>See <a href=/2018/02/complaint-part-3.html#text-box_appendix-2 title="Go here">Appendix 2</a> (page A‑7) for an amalgamated list of outcomes we would like.</div></blockquote></div><!-- Text box (style 1) - Blockquote - APPENDIX 3: [GEORGE DONNACHIE] EMAIL – REQUEST TO DELAY MULTIDISCIPLINARY MEETING (03 JUL 2015) --><div class="tb_blockquote tb-s1_left"><div class=tb-s1_type-label id=text-box_appendix-3></div><div class=tb-s1_title><h4><cite>Concerns about the care of Rumer Gomez</cite></h4><h5><b>Appendix 3:</b> <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">George Donnachie</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#george-donnachie title="Who’s Who entry">Fetal Medicine & Obstetric consultant</a></span></span></b> email – Request to delay <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">multidisciplinary meeting</span><span class=tt-s1_tooltip><span class=tt-s1_title>Multidisciplinary meeting</span><span class=tt-s1_text>A meeting of some or all members of a multidisciplinary team. See <b><abbr>MDT</abbr></b> (below) for details.</span></span></span> (03 Jul 2015)</h5></div><blockquote class="tb-s1_text carc-doc_apdx" id=appendix-3><div class=email><div class=eml_header><div class=eml_from><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">George Donnachie</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#george-donnachie title="Who’s Who entry">Fetal Medicine & Obstetric consultant</a></span></span></b></div><div class=eml_sent>03 July 2015 16:31</div><ul class=eml_to><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">June Winter</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#june-winter title="Who’s Who entry">Cardiac Liaison Nurse</a> who was our link to the Fetal Cardiology Unit</span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Zainab Gurney</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#zainab-gurney title="Who’s Who entry">initial lead midwife</a> of Steeple Team</span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Teresa Clover</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#teresa-clover title="Who’s Who entry">subsequent lead midwife</a> of Steeple Team</span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Khushi Holloway</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#khushi-holloway title="Who’s Who entry">Consultant Midwife</a> who was involved in managing the pregnancy</span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Mollie Evans</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for our <a href=/p/whos-who.html#mollie-evans title="Who’s Who entry">named midwife</a> from Dale Team</span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Clement Stuart</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#clement-stuart title="Who’s Who entry">Head of Neonatology</a></span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Ida Leigh</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#ida-leigh title="Who’s Who entry">neonatologist</a> who initially served as Rumer’s named consultant</span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Tegan Blackman</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#tegan-blackman title="Who’s Who entry">Palliative Care consultant</a></span></span></b></ul><div class=eml_cc><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Lenna Ralls</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#lenna-ralls title="Who’s Who entry">lead midwife</a> of Dale Team</span></span></b></div><div class=eml_subject>RE: <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>HR</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>HR</abbr></span><span class=tt-s1_text>Helen’s initials</span></span></span>- professionals meeting</div></div><div class=eml_body id=appendix-3_email-text><div class=eml_salutation>Dear <b class=alter_own>Zainab</b>,</div><p id=appendix-3_para-1>Quite a few people have seen Helen & her partner.<p id=appendix-3_para-2>She is now only 26+ weeks. Can I ask that we hold this <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>MDT</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>MDT</abbr></span><span class=tt-s1_text><span class=tt-s1_text_para>Abbreviation for <dfn>Multi Disciplinary Team</dfn>. Refers to a group of healthcare professionals with different areas of expertise who are working collaboratively on a case.</span><span class=tt-s1_text_para>In this instance the actual reference is to an <abbr>MDT</abbr> <em>meeting</em>, also known as a <dfn>Multi Disciplinary Meeting</dfn> (<abbr>MDM</abbr>) or <dfn>professionals’ meeting</dfn>.</span></span></span></span> at present.<p id=appendix-3_para-3>She saw the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">neonatal</span><span class=tt-s1_tooltip><span class=tt-s1_title>Neonatal Unit</span><span class=tt-s1_text><a href=/p/whos-who.html#nnu title="Who’s Who entry – Neonatal Unit">Who’s Who entry</a></span></span></span> & <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">palliative</span><span class=tt-s1_tooltip><span class=tt-s1_title>Paediatric Palliative Care Team</span><span class=tt-s1_text><a href=/p/whos-who.html#paediatric-palliative-care-team title="Who’s Who entry – Paediatric Palliative Care Team">Who’s Who entry</a></span></span></span> team yesterdays - <b class=alter_own>Ida Leigh</b> & <b class=alter_own>Tegan Blackman</b>.<p id=appendix-3_para-4>I think we are may be trying to cover too much at present - we need to get into the third trimester in the first instance. As you know that the risk of <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>SB</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>SB</abbr></span><span class=tt-s1_text>Abbreviation for <b>stillbirth</b></span></span></span> is significant.<p id=appendix-3_para-5>So in the first instance lets get to 34 weeks. She has seen all the key people and has shared her thoughts.<p id=appendix-3_para-6>Once we get to 34 weeks, lets get the <abbr>MDT</abbr> going and then plan from there.<p id=appendix-3_para-7>I saw her yesterday and will be seeing her in 3 weeks.<div class=eml_signoff><div class=eml_signoff_prep>Thank you</div><div class=eml_signoff_words>Best wishes</div><div class=eml_signoff_name><b class=alter_own>George</b></div></div></div><div class=eml_signature><b class=alter_own>Email signature</b></div></div></blockquote></div><!-- NOTES
--><!-- POST CSS --><style scoped>#appendix-4 .eml_signoff_name{margin:0}</style><!-- POST TEXT --><!-- Text box (style 1) - Blockquote - APPENDIX 4: OUR EMAIL - PROFESSIONALS TO SEE (11 JUN 2015) --><div class="tb_blockquote tb-s1_right"><div class=tb-s1_type-label id=text-box_appendix-4></div><div class=tb-s1_title><h4><cite>Concerns about the care of Rumer Gomez</cite></h4><h5><b>Appendix 4:</b> Our email – Professionals to see (11 Jun 2015)</h5></div><blockquote class="tb-s1_text carc-doc_apdx" id=appendix-4><div class=email><div class=eml_header><div class=eml_from>Helen Roper <<b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">email address</span><span class=tt-s1_tooltip><span class=tt-s1_title></span></span></b>></div><div class=eml_sent>Thu 11/06/2015 19:53</div><div class=eml_to><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Elysia Crouch</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for our Fetal Medicine Unit <a href=/p/whos-who.html#elysia-crouch title="Who’s Who entry">link midwife</a></span></span></b> <<b class=alter_own>email address</b>></div><div class=eml_cc>Chris Gomez <<b class=alter_own>email address</b>></div><div class=eml_subject>Helen Roper <b class=alter_own>hospital number</b> (Trisomy 18)</div></div><div class=eml_body id=appendix-4_email-text><div class=eml_salutation>Dear <b class=alter_own>Elysia</b></div><p id=appendix-4_para-1>Thank you so much to you and everyone for seeing us the other day and talking through our options. Everyone in the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>FMU</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>FMU</abbr></span><span class=tt-s1_text><a href=/p/whos-who.html#fmu title="Who’s Who entry">Fetal Medicine Unit</a></span></span></span> has been great during this difficult time. We have had some initial thoughts about who we would like to see having discussed some of the questions and concerns we have at the moment.<p id=appendix-4_para-2>We feel quite strongly we would like to speak with the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">bereavement midwives</span><span class=tt-s1_tooltip><span class=tt-s1_title>Bereavement midwife team</span><span class=tt-s1_text>See <a href=/p/whos-who.html#bereavement-midwife-team title="Who’s Who entry – Bereavement midwife team">Who’s Who entry</a></span></span></span> as soon as possible to discuss the normal procedures and options around both a stillbirth and a <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>neonatal death</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Neonatal death</span><span class=tt-s1_text>The death of a liveborn baby within their first month of life</span></span></span> as we obviously could be faced with a stillbirth at anytime and would like to have some time to make plans.<p id=appendix-4_para-3>We have an appointment with <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">cardiology</span><span class=tt-s1_tooltip><span class=tt-s1_title>Cardiology</span><span class=tt-s1_text>Refers to <a href=/p/whos-who.html#fetal-cardiology-unit title="Who’s Who entry – Fetal Cardiology Unit">Fetal Cardiology</a></span></span></span> on the 30<sup>th</sup> June and would like to keep this appointment if possible as we would like to discuss both the impact of the cardiac defect on how the baby would progress after birth and also of the risk of recurrence of cardiac anomalies and management of a future pregnancy from a cardiac perspective<p id=appendix-4_para-4>We would like to speak to the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">neonatologists</span><span class=tt-s1_tooltip><span class=tt-s1_title>Neonatologists</span><span class=tt-s1_text>See <a href=/p/whos-who.html#nnu title="Who’s Who entry – Neonatal Unit">Who’s Who entry</a></span></span></span> and <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">palliative care</span><span class=tt-s1_tooltip><span class=tt-s1_title>Palliative Care</span><span class=tt-s1_text>Refers to the <a href=/p/whos-who.html#paediatric-palliative-care-team title="Who’s Who entry">Paediatric Palliative Care Team</a></span></span></span> teams to discuss our options in terms of afterbirth care should the baby be born alive especially if it lives for a short time, this is not quite so urgent as obviously we don’t need to make these plans so soon as they are unlikely to become relevant until later but we would like to get a sense of our options so whenever this can be arranged would be good.<p id=appendix-4_para-5>In terms of <abbr>FMU</abbr> we today got a letter for an appointment on the 18<sup>th</sup> June but I understood this would be cancelled and rescheduled for the week of the 29<sup>th</sup> June. It would be great to find out when the new appointment is. Mr <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Donnachie</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for our <a href=/p/whos-who.html#george-donnachie title="Who’s Who entry">Fetal Medicine/Obstetric consultant</a></span></span></b> also talked about possibly being able to access <abbr>FMU</abbr> for a scan rather than <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>PAU</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#pau title="Who’s Who entry">Pregnancy Assessment Unit</a></span></span></b> should we experience reduced fetal movements, however we didn’t discuss the details and as I will be 24 weeks next week I wondered how this would work and if/when a plan could be put into place. In addition we are taking a short trip to Berlin and Mr <b class=alter_own>Donnachie</b> also offered to write us a fit to travel note due to the complicated pregnancy. I spoke to our travel insurance and they would like this. Is this possible to arrange?<p id=appendix-4_para-6>In terms of midwives it was suggested we should engage with the <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Steeple Team</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#steeple-team title="Who’s Who entry">midwifery team</a> that dealt with high-risk pregnancies</span></span></b> midwives and we had an initial appointment scheduled for 9.30am on the 18<sup>th</sup> June. We would like to keep this appointment for now and make decisions on midwife care after we have met them, our current midwife team (<b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Dale</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for our existing <a href=/p/whos-who.html#dale-team title="Who’s Who entry">midwifery team</a></span></span></b>) is happy to share care or to hand over whichever is most appropriate.<p id=appendix-4_para-7>We did feel that we would like to have a conversation with <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">genetics</span><span class=tt-s1_tooltip><span class=tt-s1_title>Genetics</span><span class=tt-s1_text>See <a href=/p/whos-who.html#genetics title="Who’s Who entry – Genetics">Who’s Who entry</a></span></span></span> if they would be happy, mainly to have a fuller understanding of Edwards and its causes and inheritance patterns. We understand most of the time Edwards’ syndrome is random but would like to confirm this in our case and also discuss how we would manage any future pregnancy loss – if we had another miscarriage, that would be three. Probably it seems best to do this after the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>full karotype</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Full karotype [<abbr>sic</abbr>]</span><span class=tt-s1_text><span class=tt-s1_text_para>The full results from the amniocentesis that led to Rumer’s trisomy 18 diagnosis.</span><span class=tt-s1_text_para>Results for trisomies 13, 18 and 21 (Patau’s, Edwards’ and Down’s syndromes) were returned after a few days, but other, less common chromosomal anomalies would only show up after about three weeks, when the entire <dfn>karyotype</dfn> of all the chromosomes had been analysed.</span></span></span></span> is available in case anything else shows up.<p id=appendix-4_para-8>Thanks again so much for all your and the <abbr>FMU</abbr> team’s support and help.<p id=appendix-4_para-9>We are available by email or phone anytime (Helen: <b class=alter_own>mobile phone number</b>. Chris: <b class=alter_own>mobile phone number</b>. Landline: <b class=alter_own>home phone number</b>) We will be away from the late afternoon of the 18/6 until the 24/6 if this helps at all with arranging appointments.<div class=eml_signoff><div class=eml_signoff_words>Best wishes</div><div class=eml_signoff_name>Helen & Chris</div></div></div></div></blockquote></div><!-- Text box (style 1) - Blockquote - APPENDIX 5: [IDA LEIGH] EMAIL - INITIAL NEONATAL CARE PLAN (14 JUL 2015) --><div class="tb_blockquote tb-s1_left"><div class=tb-s1_type-label id=text-box_appendix-5></div><div class=tb-s1_title><h4><cite>Concerns about the care of Rumer Gomez</cite></h4><h5><b>Appendix 5:</b> <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Ida Leigh</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#ida-leigh title="Who’s Who entry">neonatologist</a> who initially served as Rumer’s named consultant</span></span></b> email – Initial <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">neonatal</span><span class=tt-s1_tooltip><span class=tt-s1_title>Neonatal Unit</span><span class=tt-s1_text>See <a href=/p/whos-who.html#nnu title="Who’s Who entry – Neonatal Unit">Who’s Who entry</a></span></span></span> care plan (14 Jul 2015)</h5></div><blockquote class="tb-s1_text carc-doc_apdx" id=appendix-5><div class=email><div class=eml_header><div class=eml_from><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Ida Leigh</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#ida-leigh title="Who’s Who entry">neonatologist</a> who initially served as Rumer’s named consultant</span></span></b></div><div class=eml_sent>14 July 2015 11:41</div><ul class=eml_to><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">George Donnachie</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for our <a href=/p/whos-who.html#george-donnachie title="Who’s Who entry">Fetal Medicine/Obstetric consultant</a></span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Tegan Blackman</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#tegan-blackman title="Who’s Who entry">Palliative Care consultant</a></span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Khushi Holloway</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#khushi-holloway title="Who’s Who entry">Consultant Midwife</a> who oversaw the midwifery care</span></span></b></ul><div class=eml_cc><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Evan Marshall</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#evan-marshall title="Who’s Who entry">cardiologist</a> who served as Rumer’s Fetal Cardiology consultant</span></span></b></div><div class=eml_subject><abbr>RE</abbr>: Helen Roper</div></div><div class=eml_body id=appendix-5_email-text><div class=eml_salutation>Dear <b class=alter_own>George</b>, <b class=alter_own>Tegan</b> and <b class=alter_own>Khushi</b></div><p id=appendix-5_para-1>We have discussed Helen's baby extensively at our <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled><abbr>NICU</abbr></dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>NICU</abbr></span><span class=tt-s1_text><b>Neonatal Intensive Care Unit</b><span class=dash_norm></span>the highest of three levels of care in the <a href=/p/whos-who.html#nnu title="Who’s Who entry">Neonatal Unit</a>. Also used to refer to the unit as a whole.</span></span></span> consultant meeting today, with the aim<br>of formulating clar management decisions about what we feel is appropriate. Will put this down formally but in summary:<h4 id=appendix-5_term-birth>Term birth</h4><p id=appendix-5_term-birth_para-1>We feel it is appropriate to offer non-invasive support:-<ul id=appendix-5_term-birth_list-1><li id=appendix-5_term-birth_list-1_1>Assessment at birth, <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">neonatal</span><span class=tt-s1_tooltip><span class=tt-s1_title>Neonatal</span><span class=tt-s1_text>See <a href=/p/whos-who.html#nnu title="Who’s Who entry">Neonatal Unit</a></span></span></span> and <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">cardiac</span><span class=tt-s1_tooltip><span class=tt-s1_title>Cardiac</span><span class=tt-s1_text>Refers to <a href=/p/whos-who.html#paediatric-cardiology title="Who’s Who entry">Paediatric Cardiology</a></span></span></span> (neonatal to assess general condition and give <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>non-invasive respiratory support</dfn></span><span class="tt-s1_tooltip tt_btm tt_mob_def-pos"><span class=tt-s1_title>Non-invasive respiratory support</span><span class=tt-s1_text><span class=tt-s1_text_para>Breathing support that does not invade the body.</span><span class=tt-s1_text_para>Generally speaking, <em>invasive</em> respiratory support refers to <dfn>intubation</dfn><span class=dash_norm></span>that is, a tube inserted into the patient’s windpipe through which a machine provides breaths<span class=dash_norm></span>with everything short of that being classed as non-invasive.</span><span class=tt-s1_text_para>Here, however (judging by her comments below) Dr [Leigh] appears to be using the term to refer only to the very lowest levels of respiratory support such as repositioning Rumer’s body to minimise any airway obstrutctions. Whether she is going even so far as <dfn>nasal cannula oxygen</dfn> (delivered through tubes positioned just inside the nostrils) is unclear.</span></span></span></span> if required and requested by parents, see below)(cardiac to assess exact anatomy with <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled><abbr>echo</abbr></dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>Echo</abbr></span><span class=tt-s1_text>Short for <dfn>echocardiogram</dfn><span class=dash_norm></span>a specialised ultrasound scan of the heart</span></span></span>, for parental information as requested. We would like to make it clear that this is in support of their clarity of information about the baby's exact cardiac anatomy only. The neonatal team would not be supporting investigation with a view to surgical/invasive intervention, please see below)<li id=appendix-5_term-birth_list-1_2><span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>Standard basic respiratory resuscitation</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Standard basic respiratory resuscitation</span><span class=tt-s1_text>This is not a recognised medical term. Dr [Leigh] seems to be using it to describe a short attempt at resuscitation at birth using respiratory elements from the Resuscitation Council’s <a href=https://www.resus.org.uk/resuscitation-guidelines/resuscitation-and-support-of-transition-of-babies-at-birth/#suggested title="Resuscitation Council – Resuscitation and support of transition of babies at birth – Suggested Sequence of Actions">Resuscitation and support of transition of babies at birth</a> protocol.</span></span></span> , in case it may help baby make the respiratory transition from fetal to infant phase. This entails up to 5 <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">inflation breaths</span><span class=tt-s1_tooltip><span class=tt-s1_title>Inflation breaths</span><span class=tt-s1_text><q class=q_generic>Breaths</q> (from a <a href=https://en.wikipedia.org/wiki/Bag_valve_mask title="Wikipedia page">bag valve mask</a> in a hospital setting) that are intended to replace the fluid that has been present in a newborn baby’s lungs with air. This requires longer, higher-pressure breaths than would be used for maintaining respiration.</span></span></span> followed by 1 minute of <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">ventilation breaths</span><span class=tt-s1_tooltip><span class=tt-s1_title>Ventilation breaths</span><span class=tt-s1_text><q class=q_generic>Breaths</q> (from a <a href=https://en.wikipedia.org/wiki/Bag_valve_mask title="Wikipedia page">bag valve mask</a> in a hospital setting) that are intended to allow the patient’s lungs to function while they are not breathing for themselves, as in <a href=http://www.sja.org.uk/sja/first-aid-advice/loss-of-responsiveness/unresponsive-not-breathing/adult.aspx title="St. John Ambulance page – Unresponsive and not breathing adult – CPR">adult <abbr>CPR</abbr></a>.</span></span></span>.<li id=appendix-5_term-birth_list-1_3>Admission to <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled><abbr>SCBU</abbr></dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>SCBU</abbr></span><span class=tt-s1_text><b>Special Care Baby Unit</b><span class=dash_norm></span>the lowest of three levels of care on the <a href=/p/whos-who.html#nnu title="Who’s Who entry">Neonatal Unit</a>.</span></span></span> for <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>comfort care</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Comfort care</span><span class=tt-s1_text><span class=tt-s1_text_para>Under comfort care, no attempt is made to cure the patient’s condition(s). Instead, the aim is to keep them as comfortable as possible for the time they have left<span class=dash_norm></span>for example, by treating pain or distress.</span><span class=tt-s1_text_para>Also known as <dfn>palliative care</dfn>.</span></span></span></span> if requested by parents<li id=appendix-5_term-birth_list-1_4>Comfort care whether the baby stays with parents or is on <abbr>SCBU</abbr></ul><p id=appendix-5_term-birth_para-2>As a neonatal unit, we feel that we would not be able to offer invasive intervention including:<ul id=appendix-5_term-birth_list-2><li id=appendix-5_term-birth_list-2_1>Ventilation (<span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>intubation</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Intubation</span><span class=tt-s1_text>The insertion of a breathing tube into the patient’s windpipe through which a machine can provide breaths (<q class=q_generic>ventilate</q>) directly into their lungs.</span></span></span>/<span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled><abbr>IPPV</abbr></dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>IPPV</abbr></span><span class=tt-s1_text><b>Intermittent Positive Pressure Ventilation</b>: like <i>intubation and ventilation</i>, but through a facemask rather than a tube in the patient’s windpipe.</span></span></span> or <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled><abbr>CPAP</abbr></dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>CPAP</abbr></span><span class=tt-s1_text><b>Continuous Positive Airway Pressure</b>: pressurised air is fed into the patient’s airways in order to prevent their lungs and/or airways from collapsing between breaths, enabling them to breathe more effectively. Normally delivered through a facemask.</span></span></span>)<li id=appendix-5_term-birth_list-2_2>Monitoring including <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled><abbr>sats</abbr></dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>Sats</abbr></span><span class=tt-s1_text>Short for <b>oxygen saturation</b>: a measure of how much oxygen the patient’s blood is carrying. A routine part of hospital monitoring.</span></span></span> etc (as we will not be acting to escalate care, hence rendering monitoring non useful)<li id=appendix-5_term-birth_list-2_3>Invasive testing eg <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">EGG</span><span class=tt-s1_tooltip><span class=tt-s1_title>EGG [sic]</span><span class=tt-s1_text>Typo for <dfn><abbr>EEG</abbr></dfn>, or <a href=https://www.nhs.uk/conditions/electroencephalogram/ title="NHS Choices description">electroencephalogram</a>: a test that measures brain activity, in which electrodes are attached to the patient’s head while a recording is taken.</span></span></span> scalp electrodes or the potential use of <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">antiepileptic drugs</span><span class="tt-s1_tooltip tt_btm tt_mob_def-pos"><span class=tt-s1_title>Antiepileptic drugs</span><span class=tt-s1_text>During our first appointment with Drs [Leigh] and [Blackman], we had mentioned for discussion a research paper that suggested that the use of antiepileptic drugs may be effective in treating <dfn>apnoeas</dfn> (pauses in breathing) that are common in trisomy 18. Neither doctor was familiar with this approach. They agreed to investigate further, but Dr [Blackman]’s initial thoughts were that such drugs should only be prescribed if an <abbr>EEG</abbr> showed seizure activity.</span></span></span> if<br>unproven/not evidence-cased (we will defer to our neurology and palliative care colleagues in the UK about this; we do not personally have any experience of this use but are happy to peruse the literature that Helen will provide)</ul><h4 id=appendix-5_preterm-birth>Preterm birth</h4><p id=appendix-5_preterm-birth_para-1>We feel comfort care only would be appropriate.<h4 id=appendix-5_further-action-planned>Further action planned</h4><p id=appendix-5_further-action-planned_para-1>We also feel that it is important to seek our cardiology, <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">cardiac surgery</span><span class=tt-s1_tooltip><span class=tt-s1_title>Cardiac Surgery</span><span class=tt-s1_text>See <a href=/p/whos-who.html#paediatric-cardiac-surgery title="Who’s Who entry">Paediatric Cardiac Surgery</a></span></span></span> and <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">paediatric surgery</span><span class=tt-s1_tooltip><span class=tt-s1_title>Paediatric Surgery</span><span class=tt-s1_text>See <a href=/p/whos-who.html#paediatric-surgery title="Who’s Who entry">Paediatric Surgery</a></span></span></span> colleagues' opinions now on what intervention they feel is appropriate, so that we have a consolidated <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>CLHT</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#clht title="Who’s Who entry">hospital trust</a> that managed the hospitals at which Rumer and Helen received the vast majority of their care</span></span></b> overall picture of management options asap from all professional groups involved.<p id=appendix-5_further-action-planned_para-2>However, we would clarify that the neonatal unit would not support further invasive intervention from our surgical colleagues should they deem this neccisary and appropriate (ie we will not be able to<br>support providng intensive care including ventilation for operative procedures such as cardiac surgery or diaphragm surgery). This may mean that the baby should be delivered and managed at another <abbr>NICU</abbr>,, should another <abbr>NICU</abbr> feel able to support these procedures.<p id=appendix-5_further-action-planned_para-3>The rational for all this is the context that Baby Rumer has a congenitally lethal condition for which there is no evidence (from literature or collective clinical experince) that active aggressive intervention will improve the quality of her life. After birth, she will need to e considered as an individual in her own right and although we feel it is very important to strongly consider parents' wishes, we also feel that we are unable to agree to aggressive intensive care intervention which will will impart unacceptable discomfort/pain ( ventilation, surgery. <abbr>EEG</abbr> needles in scalp etc etc) in a child who is unable to have the benefit of longterm comfort/life quality improvement from this level of intervention. We are aware that the parental experience<br>and perception of how their child dies is terribly imporatnt (eg they may derive great comfort from knowing that <q class=q_single_straight>everything has been done</q> to try and extend their time with her) but we do not feel able to support imposing objectively unpleasant procedures on Rumer (insertion of <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>lines</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Lines</span><span class=tt-s1_text>Tubes inserted into the patient’s blood vessels for purposes such as administering medication and taking accurate blood pressures. There are various different types for use in different situations.</span></span></span>, intubation, scalp<br>electrodes etc). Even if it will help her parents, we do not feel this is justifyable to us as clinicians, in weighing what Rumer may potentially be subjected to against both her short/longterm comfort and outcome.<p id=appendix-5_further-action-planned_para-4>After we have a concerted <b class=alter_own><abbr>CLHT</abbr></b> opinion from ourselves, cardiology, cardiac surgery and <abbr>paed</abbr> surgery. we could present this case to the local <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Trust ethics comittee</span><span class=tt-s1_tooltip><span class=tt-s1_title>Trust ethics committee</span><span class=tt-s1_text>See <a href=/p/whos-who.html#cec title="Who’s Who entry">Clinical Ethics Committee</a></span></span></span> and also to the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Trust legal team</span><span class=tt-s1_tooltip><span class=tt-s1_title>Trust legal team</span><span class=tt-s1_text>See <a href=/p/whos-who.html#legal-department title="Who’s Who entry">Legal Department</a></span></span></span> for their opinion. It will take at least a couple of weeks to get that going, so an early <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>MDT</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>MDT</abbr></span><span class=tt-s1_text><span class=tt-s1_text_para>Abbreviation for <dfn>Multi Disciplinary Team</dfn>. Refers to a group of healthcare professionals with different areas of expertise who are working collaboratively on a case.</span><span class=tt-s1_text_para>In this instance the actual reference is to an <abbr>MDT</abbr> <em>meeting</em>, also known as a <dfn>Multi Disciplinary Meeting</dfn> (<abbr>MDM</abbr>) or <dfn>professionals’ meeting</dfn>.</span></span></span></span> asap would be good. It is a shame <b class=alter_own>Evan</b> is away, as we feel it cannot wait for the next fortnight before we start the process, particularly with Helen and Chris' expressed need for clear plans now. Will liase after <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>fetal med</abbr> meeting</span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>Fetal Med</abbr> meeting</span><span class=tt-s1_text>Refers to a weekly multidisciplinary meeting hosted by the <a href=/p/whos-who.html#fmu title="Who’s Who entry">Fetal Medicine Unit</a>. The meetings were attended by staff from the various different specialisms who would care for babies known to have medical needs who were yet to be born, and were intended to facilitate care-planning and the sharing of knowledge about the baby’s progress <i>in utero</i>.</span></span></span> today to try and get <abbr>MDT</abbr> set up with yourselves, cardiology/<span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>cardiothoracics</dfn></span><span class=tt-s1_tooltip><span class=tt-s1_title>Cardiothoracics</span><span class=tt-s1_text>Refers to the <a href=/p/whos-who.html#paediatric-cardiac-surgery title="Who’s Who entry">Paediatric Cardiac Surgery</a> department<span class=dash_norm></span>so-called because cardiothoracic surgeons operate on organs inside the chest (or <dfn>thorax</dfn>), including the lungs as well as the heart.</span></span></span> and <abbr>paed</abbr> surgery??<p id=appendix-5_further-action-planned_para-5>From an overall management (including surgical/cardiology/neurology) point, we could then aim to offer Helen and Chris 2nd/3rd opinions (<b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>Charlton</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Casual name for <a href=/p/whos-who.html#charlton-university-hospital title="Who’s Who entry">Charlton University Hospital</a> (pseudonym)</span></span></b> and <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>Seb’s</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Casual name for <a href=/p/whos-who.html#sebs title="Who’s Who entry">St. Sebastian’s Hospital</a> (pseudonym)</span></span></b>/<b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>RCH</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Abbreviation for <a href=/p/whos-who.html#royal-childrens-hospital title="Who’s Who entry">Royal Children’s Hospital</a> (pseudonym)</span></span></b> would be nearest centres to offer cardiac/surgical subspecialities and <abbr>NICU</abbr>). From a <q class=q_single_straight>purely <abbr>NICU</abbr></q> 2nd point of view (<abbr>re</abbr>: would another <abbr>NICU</abbr> support ventilation etc), I will contact <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Ignas Boyton</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for (presumably) a <a href=/p/whos-who.html#ignas-boyton title="Who’s Who entry">neonatologist</a> at [RCH]</span></span></b> at <b class=alter_own><abbr>RCH</abbr></b> now, so that we have that in process.<p id=appendix-5_further-action-planned_para-6>Will obviously discuss further with all involved!<p id=appendix-5_further-action-planned_para-6>(note: Neonatal consultants present at meeting - <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Clement Stuart</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#clement-stuart title="Who’s Who entry">Head of Neonatology</a> (also a neonatal consultant)</span></span></b>, <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Sean Charlwood</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for a <a href=/p/whos-who.html#sean-charlwood title="Who’s Who entry">neonatal consultant</a> who was also a member of the [Clinical Ethics Committee]</span></span></b>, <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Daisy-Ann Bergin</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for a senior <a href=/p/whos-who.html#daisy-ann-bergin title="Who’s Who entry">neonatal consultant</a></span></span></b>, <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Charan Bateman</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for a <a href=/p/whos-who.html#charan-bateman title="Who’s Who entry">locum neonatal consultant</a></span></span></b>, <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Abriella Burlton</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for a <a href=/p/whos-who.html#abriella-burlton title="Who’s Who entry">neonatal doctor</a> whose grade appeared to be equivalent to that of a consultant</span></span></b>, <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Jessie Gallo</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for one of the <a href=/p/whos-who.html#jessie-gallo title="Who’s Who entry">neonatal consultants</a></span></span></b>, <b class=alter_own>Ida Leigh</b>. Will also consult <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Yehuda Hamnett</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#yehuda-hamnett title="Who’s Who entry">neonatal consultant</a> who would later take over the role of being Rumer’s named consultant</span></span></b> and <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Daenerys Asprey</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#daenerys-asprey title="Who’s Who entry">neonatal consultant</a> who would eventually act as a sort of second named consultant for Rumer</span></span></b> tomorrow. <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Rodney Greenlaw</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#rodney-greenlaw title="Who’s Who entry">Clinical Director of Children’s Medicine and Neonatology</a> (also a neonatal consultant)</span></span></b> on <abbr>A/L</abbr> for <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>2/52</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>2/52</abbr></span><span class=tt-s1_text>Abbreviation for <q class=q_generic>two weeks</q></span></span></span>.)<div class=eml_signoff><div class=eml_signoff_words><abbr>BW</abbr>,</div><div class=eml_signoff_name><b class=alter_own>Ida</b></div></div></div><div class=eml_signature><b class=alter_own>Email signature</b></div></div></blockquote></div><!-- Text box (style 1) - Blockquote - APPENDIX 6: [KUSHI HOLLOWAY] EMAIL - PROVISIONAL OBSTETRIC/MIDWIFERY CARE PLAN (29 JUL 2015) --><div class="tb_blockquote tb-s1_right"><div class=tb-s1_type-label id=text-box_appendix-6></div><div class=tb-s1_title><h4><cite>Concerns about the care of Rumer Gomez</cite></h4><h5><b>Appendix 6:</b> <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Khushi Holloway</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#khushi-holloway title="Who’s Who entry">Consultant Midwife</a> who became closely involved with the pregnancy</span></span></b> email<span class=dash_norm_formal></span>Provisional <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">obstetric</span><span class=tt-s1_tooltip><span class=tt-s1_title>Obstetric</span><span class=tt-s1_text>See <a href=/p/whos-who.html#obstetrics title="Who’s Who entry">Obstetrics department</a></span></span></span>/<span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">midwifery</span><span class=tt-s1_tooltip><span class=tt-s1_title>Midwifery</span><span class=tt-s1_text>See <a href=/p/whos-who.html#midwifery title="Who’s Who entry">Midwifery department</a></span></span></span> care plan (29 Jul 2015)</h5></div><blockquote class="tb-s1_text carc-doc_apdx" id=appendix-6><div class=email><div class=eml_header><div class=eml_from><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Khushi Holloway</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#khushi-holloway title="Who’s Who entry">Consultant Midwife</a> who became closely involved with the pregnancy</span></span></b></div><div class=eml_sent>Wednesday, July 29, 2015 05:48 PM</div><ul class=eml_to><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Ida Leigh</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#ida-leigh title="Who’s Who entry">neonatal consultant</a> who initially served as Rumer’s named consultant</span></span></b><li><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">George Donnachie</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for our <a href=/p/whos-who.html#george-donnachie title="Who’s Who entry">Fetal Medicine/Obstetric consultant</a></span></span></b></ul><div class=eml_subject><abbr>RE</abbr>: <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>CEC</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Abbreviation for the hospital trust’s <a href=/p/whos-who.html#cec title="Who’s Who entry">Clinical Ethics Committee</a> (pseudonym)</span></span></b> - Urgent referral FRIDAY 31st JULY</div></div><div class=eml_body id=appendix-6_email-text><div class=eml_salutation>Dear <b class=alter_own>George</b></div><p id=appendix-6_para-1>As discussed at today's meeting, the principles for pregnancy care might be:<ul id=appendix-6_list><li id=appendix-6_list_1>Antenatal care should be largely in keeping with the <q class=q_single_straight>usual</q> care package. This can of course be tailored to Helen's individual circumstances. For example, additional <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled><abbr>USS</abbr></dfn>s</span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>USS</abbr></span><span class=tt-s1_text>Ultrasound Scan</span></span></span> and <abbr>MRI</abbr> can be offered as these will hopefully give a clearer picture of unborn baby Rumer's physical development and possible prognosis and will enable care planning at birth that will best meet her needs.<li id=appendix-6_list_2>We do not believe that it is appropriate to offer <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">antenatal in-patient admission</span><span class=tt-s1_tooltip><span class=tt-s1_title>Antenatal in-patient admission</span><span class=tt-s1_text>This was something we’d discussed with [Khushi] during some of our meetings. Trisomy 18 pregnancies carry a very high risk of stillbirth which we wanted to minimise. <abbr>CTG</abbr> monitoring (see below) can often give an indication as to whether a stillbirth is likely in the near future; if so, an induction or caesarean section can be performed in order to save the baby’s life.</span></span></span> at <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">33 or 34 weeks</span><span class=tt-s1_tooltip><span class=tt-s1_title>33 or 34 weeks</span><span class=tt-s1_text>Since our research had indicated that the gestation at which chances of survival for preterm babies with trisomy 18 approached that of babies without trisomy 18 was around 33 weeks, this was the gestation from which we wanted regular monitoring. If we were to undergo monitoring three times daily, as we were considering, this would realistically mean admission to the Antenatal Ward.</span></span></span>.<li id=appendix-6_list_3>We do not believe it is appropriate to offer three times daily <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><dfn class=unstyled>cardiotocograph</dfn>s</span><span class=tt-s1_tooltip><span class=tt-s1_title>Cardiotocograph (<abbr>CTG</abbr>)</span><span class=tt-s1_text>A type of monitoring whereby a pair of sensors are attached to a pregnant woman’s stomach, measuring the baby’s heartrate over time as well as tightenings of the uterus. These are output as a graph and through a speaker. It is possible to estimate whether the baby is in, or approaching, fetal distress (which if nothing were done would lead to a stillbirth) by interpreting the patterns formed.</span></span></span> (<abbr>CTG</abbr>s) to monitor unborn baby Rumer's heart rate as an in-patient or as an out-patient - we believe that the reality of this would cause undue stress and anxiety for the parents.<li id=appendix-6_list_4>We believe that if fetal heart rate monitoring were to show signs of impending fetal demise, it would not be appropriate to intervene by carrying out an emergency caesarean section. We do not believe that the baby would have a reasonable chance of survival in these circumstances. Furthermore, we believe that this would put Rumer's mother Helen at risk from complications of major surgery that cannot be justified to attempt to save the life of a baby that is showing signs of demise and already has a poor chance of survival compared to that of a normally developed baby with normal chromosomes.<li id=appendix-6_list_5>We do not believe that preterm delivery by emergency caesarean section would be in unborn baby Rumer's best interest. We believe that this could worsen her chance of survival.<li id=appendix-6_list_6>If labour starts spontaneously, at whatever stage, we would aim for a vaginal delivery, unless there was an increase in material risk for Helen Roper, in which case, emergency caesarean section could be offered.<li id=appendix-6_list_7>We would not consider delivery by elective caesarean section sooner than 39 weeks - the usual gestation for elective caesareans.<li id=appendix-6_list_8>We would prefer to focus on providing optimal emotional support for Helen and Chris and to ensure that all possible preparations in the event of a live birth have been discussed and agreed, bearing in mind the expected condition of unborn baby Rumer.</ul><p id=appendix-6_para-2>Please could you<br>keep me in the loop with whatever you decide to submit to the ethics committee. I also think the submission should be approved by <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Keilan</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#keilan-godwin title="Who’s Who entry">Clinical Director of Women’s Services</a></span></span></b><br> and <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Hero</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#hero-flavell title="Who’s Who entry">Head of Obstetrics</a></span></span></b>.<div class=eml_signoff><div class=eml_signoff_words><abbr>BW</abbr></div><div class=eml_signoff_name><b class=alter_own>Khushi</b></div></div></div></div></blockquote></div><!-- SHARE BUTTONS (bottom) --><div class=sharethis_postbottom></div><!-- Both --><div class=addthis_inline_share_toolbox_dkmm></div><!-- Desktop --><div class=addthis_inline_share_toolbox_dkmm_dc83></div><!-- Mobile --><!-- SERIES NAVIGATION FOOTER --><div class="series-nav sn_wrapper_outer"><div class=sn_wrapper_inner><span class=sn_prev><a href=/2018/02/complaint-part-3.html title="Go to previous part">3</a> </span><span class=sn_ref><a href=/p/complaint.html title="Contents page listing all parts in the series"></a> <span class=sn_separator></span> <a href=/p/whos-who.html title="List of people and organisations mentioned, with brief descriptions"></a> </span><span class=sn_next><a href=/2018/03/complaint-part-5.html title="Go to next part">5</a></span></div></div><!-- POST BODY ENDS -->Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-5988276538849742792018-02-15T11:17:00.000+00:002019-07-11T02:42:03.724+01:00Complaint about Rumer’s care, part 3<!-- POST BODY STARTS --><!-- POST CSS --><!-- Activate only to show invisible & hide temporary elements --><!-- <style scoped> div.non-existent, h4.non-existent, h5.non-existent, h6.non-existent, details.non-existent, summary.non-existent, ul.non-existent, ol.non-existent, li.non-existent, dl.non-existent, dt.non-existent, dd.non-existent {display: block !important;} span.non-existent, a.non-existent {display: inline !important;} .hidden {visibility: initial !important;} .temp {display: none;} </style> --><style scoped>#appendix-2_outcome-list,#appendix-2_outcome-list ol{counter-reset:item-no;margin-left:0;padding-left:0}#appendix-2_outcome-list li{position:relative;padding-left:1.85rem;list-style:none}#appendix-2_outcome-list li::before{counter-increment:item-no;position:absolute;left:0}li#appendix-2_outcome-list_b::before{counter-increment:item-no 2}#appendix-2_outcome-list>li::before{content:counter(item-no,upper-alpha)}#appendix-2_outcome-list ol>li::before{content:counter(item-no) "."}#appendix-2_outcome-list ol ol>li::before{content:counter(item-no,lower-alpha) ")"}#appendix-2_outcome-list ol ol ol>li::before{content:counter(item-no,lower-roman) "."}#appendix-2_outcome-list ol ol ol ol>li::before{content:"(" counter(item-no) ")"}#appendix-2_outcome-list>li{font-weight:700}#appendix-2_outcome-list ol>li{margin-bottom:1.5em}.mobile #appendix-2_outcome-list ol>li{margin-bottom:1.7em}#appendix-2_outcome-list ol>li#appendix-2_outcome-list_j4,.mobile #appendix-2_outcome-list ol>li#appendix-2_outcome-list_j4{margin-bottom:0}#appendix-2_outcome-list ol ol>li,.mobile #appendix-2_outcome-list ol ol>li{font-weight:400;margin-bottom:0}</style><!-- POST SUBTITLE --><h3 class=postsubtitle>Preamble & Appendix 2</h3><!-- SHARE BUTTONS (top) --><div class=addthis_inline_share_toolbox_3kw8></div><!-- Desktop --><div class=addthis_inline_share_toolbox_hdjj></div><!-- Mobile --><!-- POST TOC --><div class=post-toc><details><summary class=pp-toc_title><div></div></summary><ul class=pp-toc_list><li class=pp-toc_item_begin><a href=#article-start title="Go to beginning of article"><span></span></a><li class=pp-toc_item_h4><a href=#text-box_preamble title="Go here">Preamble</a><li><details><summary class=pp-toc_item_h4><a href=#text-box_appendix-2 title="Go here">APPENDIX 2: Amalgamated list of outcomes we would like</a></summary><ul><li><details><summary class=pp-toc_item_body><a href=#appendix-2_outcome-list_b title="Go here">B PREGNANCY</a></summary><ul><li class=pp-toc_item_body><a href=#appendix-2_outcome-list_b1 title="Go here">1. Delays in care-planning</a><li class=pp-toc_item_bod><a href=#appendix-2_outcome-list_b2 title="Go here">2. Failure to consider all care management options</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_b3 title="Go here">3. Access to further opinions</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_b4 title="Go here">4. Attitude of staff</a></ul></details><li class=non-existent><details><summary class=pp-toc_item_body><a href=#appendix-2_outcome-list_c title="Go here">C [CLINICAL ETHICS COMMITTEE]</a></summary><ul><li class=pp-toc_item_body><a href=#appendix-2_outcome-list_c1 title="Go here">1. Referral to [CEC] and involvement of patients/parents</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_c2 title="Go here">2. Handling of Rumer’s cas by the [CEC]</a></ul></details><li class=non-existent><details><summary class=pp-toc_item_body><a href=#appendix-2_outcome-list_d title="Go here">D BIRTH</a></summary><ul><li class=pp-toc_item_body><a href=#appendix-2_outcome-list_d1 title="Go here">1. Neonatal management at birth</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_d2 title="Go here">2. Other concerns</a></ul></details><li class=non-existent><details><summary class=pp-toc_item_body><a href=#appendix-2_outcome-list_e title="Go here">E NEONATAL UNIT</a></summary><ul><li class=pp-toc_item_body><a href=#appendix-2_outcome-list_e1 title="Go here">1. Medical care</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_e2 title="Go here">2. Nursing</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_e3 title="Go here">3. Communication & culture</a></ul></details><li class=non-existent><details><summary class=pp-toc_item_body><a href=#appendix-2_outcome-list_f title="Go here">F [BLYTON WARD]</a></summary><ul><li class=pp-toc_item_body><a href=#appendix-2_outcome-list_f1 title="Go here">1. Infection control</a></ul></details><li class=non-existent><details><summary class=pp-toc_item_body><a href=#appendix-2_outcome-list_g title="Go here">G PAEDIATRIC INTENSIVE CARE UNIT (<abbr>PICU</abbr>)</a></summary><ul><li class=pp-toc_item_body><a href=#appendix-2_outcome-list_g1 title="Go here">1. Medical care</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_g2 title="Go here">2. Nursing</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_g3 title="Go here">3. Comminucation & culture</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_g4 title="Go here">4. Care during Rumer’s final 24 hours</a></ul></details><li class=non-existent><details><summary class=pp-toc_item_body><a href=#appendix-2_outcome-list_h title="Go here">H PAEDIATRIC CARDIOLOGY</a></summary><ul><li class=pp-toc_item_body><a href=#appendix-2_outcome-list_h1 title="Go here">1. Cardiology issues</a></ul></details><li class=non-existent><details><summary class=pp-toc_item_body><a href=#appendix-2_outcome-list_i title="Go here">I PAEDIATRIC PALLIATIVE CARE</a></summary><ul><li class=pp-toc_item_body><a href=#appendix-2_outcome-list_i1 title="Go here">1. Palliative Care issues</a></ul></details><li class=non-existent><details><summary class=pp-toc_item_body><a href=#appendix-2_outcome-list_j title="Go here">J OVERALL</a></summary><ul><li class=pp-toc_item_body><a href=#appendix-2_outcome-list_j1 title="Go here">1. Trisomy 18</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_j2 title="Go here">2. Working with parents</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_j3 title="Go here">3. Professionals’ meetings</a><li class="non-existent pp-toc_item_body"><a href=#appendix-2_outcome-list_j4 title="Go here">4. Other issues</a></ul></details></ul></details></ul></details></div><!-- POST TEXT --><p id=article-start>A bit of an administrative update, this one: see below for the short introductory part of the complaint, followed by <i>Appendix 2</i>, which is a list of all the outcomes we’re hoping for as a result of the complaint. The latter is compiled from shorter lists throughout the document, and in order for it to make sense, only the outcomes which relate to the parts of the complaint that have been published to date are shown. We will add to the list as further parts of the complaint are published.</p><a name='more'></a><p id=para-2>We’ll get to the meat of the complaint in the next post, starting with the first set of problems we encountered during pregnancy: delays in care-planning.</p><!-- Text box (style 1) - Blockquote - PREAMBLE --><div class="tb_blockquote tb-s1_full-width"><div class=tb-s1_type-label id=text-box_preamble></div><div class=tb-s1_title><h4><cite>Concerns about the care of Rumer Gomez</cite></h4><h5><b>Preamble</b></h5></div><blockquote class="tb-s1_text carc-doc_main" id=preamble><p id=preamble_para-1>Please see covering letter (<a href=/2017/12/complaint-part-2.html#text-box_appendix-1 title="Go here">Appendix 1</a>, page A‑5) for a summary of Rumer’s journey through the hospital.<p id=preamble_para-2>We have specific complaints about some departments’ management of Rumer’s care. There were also some general issues which recurred across many departments. We shall therefore address the specific issues chronologically, by subject or by department as appropriate before returning to the general themes.<p id=preamble_para-3>Under each section, we have broken the issues down into numbered and lettered points, followed by a summary and a list of outcomes we would like. These lists are amalgamated under <a href=#text-box_appendix-2 title="Go here">Appendix 2</a> (page A‑7).<p id=preamble_para-4>Thank you for reading.</p>Chris Gomez & Helen Roper<br>Rumer’s parents<br><br>24<sup>th</sup> October 2016<br><br><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Sections on Document Navigation and Reference (hospital numbers etc.) & Table of Contents omitted</span><span class=tt-s1_tooltip><span class=tt-s1_title></span></span></b></blockquote></div><!-- Text box (style 1) - Blockquote - APPENDIX 2: AMALGAMATED LIST OF OUTCOMES WE WOULD LIKE --><div class="tb_blockquote tb-s1_centre"><div class=tb-s1_type-label id=text-box_appendix-2></div><div class=tb-s1_title><h4><cite>Concerns about the care of Rumer Gomez</cite></h4><h5><b>Appendix 2:</b> Amalgamated list of outcomes we would like</h5></div><blockquote class="tb-s1_text carc-doc_apdx" id=appendix-2><ol id=appendix-2_outcome-list><li id=appendix-2_outcome-list_b><span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">PREGNANCY</span><span class=tt-s1_tooltip><span class=tt-s1_title>Spot the deliberate mistake!</span><span class=tt-s1_text>The list starts with item B rather than A because of an irritating quirk in the way that our word processor handled lists of this type</span></span></span><ol><li id=appendix-2_outcome-list_b1><a href=/2018/02/complaint-part-4.html#pregnancy_1 title="Go to complaint section">Delays in care-planning</a><ol><li id=appendix-2_outcome-list_b1a>An acknowledgement that care-planning and discussion of proposed care plans were delayed, leading to the risks of conflict/disagreement, ill-considered treatment or an inappropriate decision not to treat had Rumer been born prematurely. This was not in her best interests and had a negative impact on our experience of pregnancy.<li id=appendix-2_outcome-list_b1b>An undertaking that <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Central London Hospital NHS Foundation Trust</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#clht title="Who’s Who entry">hospital trust</a> that provided almost all of Rumer’s and Helen’s care</span></span></b> will commit to providing timely care-planning to all families in similar situations, in order to reduce parental stress and ensure that sufficient time is allowed for all parties to consider and discuss the care that is to be provided to newborns with an antenatal diagnosis.</ol><li id=appendix-2_outcome-list_b2><a href=/2018/03/complaint-part-5.html#pregnancy_2 title="Go to complaint section">Failure to consider all care management options</a><ol><li id=appendix-2_outcome-list_b2a>An acknowledgement that care-planning for babies without fully informing and involving parents is no longer an acceptable practice.<li id=appendix-2_outcome-list_b2b>An apology for the failure to provide full information about all the options and to fully involve us in the decisions about the care to be provided to Rumer.<li id=appendix-2_outcome-list_b2c>An acknowledgement that widely circulating care plans that have not yet been discussed and agreed with parents is not acceptable and should not have happened.<li id=appendix-2_outcome-list_b2d>An assurance that future parents with a prenatal diagnosis of trisomy 18 will be:<ol><li id=appendix-2_outcome-list_b2d-i>informed of all care management approaches, including the potential use of active treatment options such as intubation and surgeries where relevant.<li id=appendix-2_outcome-list_b2d-ii>fully involved in decision-making about their child’s care.</ol><li id=appendix-2_outcome-list_b2e>An assurance that the Trust will produce a policy in order to guide health professionals in having these detailed discussions with parents who have a prenatal diagnosis of trisomy 18 (or similar conditions). This will ensure consistency, and that all parents will be given full information.</ol><li id=appendix-2_outcome-list_b3 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#pregnancy_3" title="Go to complaint section">Access to further opinions</a><ol><li id=appendix-2_outcome-list_b3a>An assurance that Trust guidance relating to making referrals for second opinions will emphasise the importance of avoiding bias.<li id=appendix-2_outcome-list_b3b>An assurance that future families with a diagnosis of trisomy 18 for their child will always be given access to neutral second opinions.</ol><li id=appendix-2_outcome-list_b4 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#pregnancy_4" title="Go to complaint section">Attitude of staff</a><ol><li id=appendix-2_outcome-list_b4a>An acknowledgement from individual members of staff that their behaviour was inappropriate. We would appreciate apologies where appropriate if staff members feel moved to do so.<li id=appendix-2_outcome-list_b4b>An acknowledgement from the Trust that the behaviour we experienced from some members of their staff was inappropriate and unacceptable.<li id=appendix-2_outcome-list_b4c>Details of any actions the Trust has taken or will take to ensure that other families do not experience similar lapses in professional behaviour.</ol></ol><li id=appendix-2_outcome-list_c class=non-existent><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">CLINICAL ETHICS COMMITTEE</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the trust’s <a href=/p/whos-who.html#cec title="Who’s Who entry">Clinical Ethics Committee</a></span></span></b><ol><li id=appendix-2_outcome-list_c1><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#cec_1" title="Go to complaint section">Referral to </a><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>CEC</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Clinical Ethics Committee</span></span></b><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#cec_1" title="Go to complaint section"> and involvement of patients/parents</a><ol><li id=appendix-2_outcome-list_c1a>An assurance that when a case is referred to the <b class=alter_own><abbr>CEC</abbr></b>, the patient and/or their representative is informed of the referral as soon as possible.<li id=appendix-2_outcome-list_c1b>An assurance that when a referral is made to the <b class=alter_own><abbr>CEC</abbr></b>, patients/representatives are given details of the process and contact details of someone who will be able to correspond with them about any concerns or questions they may have.<li id=appendix-2_outcome-list_c1c>An assurance that when a referral is made to the <b class=alter_own><abbr>CEC</abbr></b>, all patients/representatives are offered the opportunity to submit their views and any supporting information in writing prior to the meeting and are given the option to attend if they wish to do so.<li id=appendix-2_outcome-list_c1d>A commitment that information about and contact details for the <b class=alter_own><abbr>CEC</abbr></b> will be placed on the Trust website and that contact details will be available via the switchboard.</ol><li id=appendix-2_outcome-list_c2 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#cec_2" title="Go to complaint section">Handling of Rumer’s case by the <b class=alter_own><abbr>CEC</abbr></b></a><ol><li id=appendix-2_outcome-list_c2a>A commitment that patients and/or their representatives will be informed that any written submission they make to the <b class=alter_own><abbr>CEC</abbr></b> will be circulated to all, including the clinical team, and that patients/representatives will likewise receive any submission made by the clinical team in advance of the meeting date.<li id=appendix-2_outcome-list_c2b>An assurance that patients and/or their representatives will be clearly informed of the question that the <b class=alter_own><abbr>CEC</abbr></b> will be considering when the referral is made, and that any changes will be communicated to them without delay, and in any case at least 72 hours before the meeting.<li id=appendix-2_outcome-list_c2c>An assurance that either patients/representatives and clinicians will leave the meeting when the <b class=alter_own><abbr>CEC</abbr></b> begins its discussions, or that both patients/representatives <em>and</em> clinicians will be allowed to stay for the entire discussion. This will avoid inadvertent bias. Whichever option is chosen, who will be allowed to be present will be clearly communicated to all prior to the meeting.<li id=appendix-2_outcome-list_c2d>A commitment that patients/representatives will be given a copy of the full minutes from the meeting as part of the general circulation, regardless of whether they attended. They should also be routinely offered the opportunity to challenge any inaccuracies they feel are contained within the minutes.<li id=appendix-2_outcome-list_c2e>Answers from the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Neonatal team</span><span class=tt-s1_tooltip><span class=tt-s1_title>Neonatal Unit</span><span class=tt-s1_text><a href=/p/whos-who.html#nnu title="Who’s Who entry – Neonatal Unit">Who’s Who entry</a></span></span></span> to the following questions:<ol><li id=appendix-2_outcome-list_c2e-i>What were the views of the Neonatal team at the time the <b class=alter_own><abbr>CEC</abbr></b> referral was made as to what treatment should be offered to Rumer?<li id=appendix-2_outcome-list_c2e-ii>What were the views of the Neonatal team at the time of the <b class=alter_own><abbr>CEC</abbr></b> meeting as to what treatment should be offered to Rumer?<li id=appendix-2_outcome-list_c2e-iii>What did the Neonatal team see as the purpose of the <b class=alter_own><abbr>CEC</abbr></b> meeting, given that they claimed that they always would have provided clinically appropriate treatment to Rumer, with nothing being denied purely because of her trisomy 18 diagnosis?</ol><li id=appendix-2_outcome-list_c2f>An apology from Dr <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Leigh</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#ida-leigh title="Who’s Who entry">neonatologist</a> who initially served as Rumer’s named consultant</span></span></b> for:<ol><li id=appendix-2_outcome-list_c2f-i>Her statement to the <b class=alter_own><abbr>CEC</abbr></b> that a <q class=q_single>no surgery option</q> had never been discussed with us. This is clearly contradicted by her statements to us in prior meetings and by the plan that she circulated on 14<sup>th</sup> July 2015.<li id=appendix-2_outcome-list_c2f-ii>Her statement to the <b class=alter_own><abbr>CEC</abbr></b> that <q class=q_double>the parent’s [<abbr>sic</abbr>] goal has always been towards prolongation of life for their baby until their recent submission to the ethics committee where they have indicated that they would be willing to reassess the situation.</q> We do not believe that she misunderstood our clearly stated and often repeated views to this extent. We can only conclude that this statement was an attempt to manipulate the <b class=alter_own><abbr>CEC</abbr></b> by misrepresenting us.</ol><li id=appendix-2_outcome-list_c2g>A full response to each lettered point.</ol></ol><li id=appendix-2_outcome-list_d class=non-existent>BIRTH<ol><li id=appendix-2_outcome-list_d1><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#birth_1" title="Go to complaint section">Neonatal management at birth</a><ol><li id=appendix-2_outcome-list_d1a>An acknowledgement that the Neonatal team’s communication with us was poor and a commitment that all Neonatal staff, including senior staff, will receive training in appropriate communication with parents in high-stress situations.<li id=appendix-2_outcome-list_d1b>A commitment that, in future, all care plans will be forwarded to all relevant members of the Neonatal team and will be easily accessible to them when needed.<li id=appendix-2_outcome-list_d1c>A commitment that care plans will be documented very clearly and succinctly to make them usable by staff in high-pressure situations. Lengthy letters that incorporate plans in their text are not the most user-friendly means of achieving this.<li id=appendix-2_outcome-list_d1d>A full response to each lettered point.</ol><li id=appendix-2_outcome-list_d2 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#birth_2" title="Go to complaint section">Other concerns</a><ol><li id=appendix-2_outcome-list_d2a>A full response to each lettered point.<li id=appendix-2_outcome-list_d2b>A commitment to ensuring that resuscitaires can quickly and easily be deployed in any room in which a birth may occur.</ol></ol><li id=appendix-2_outcome-list_e class=non-existent>NEONATAL UNIT<ol><li id=appendix-2_outcome-list_e1><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#nnu_1" title="Go to complaint section">Medical care</a><ol><li id=appendix-2_outcome-list_e1a>A commitment from the Neonatal Unit that parents will be offered the opportunity to meet regularly with their baby’s named consultant to review progress and raise any concerns.<li id=appendix-2_outcome-list_e1b>A commitment from the Neonatal Unit to provide the facility for parents to contact their baby’s named consultant (or a nominated deputy) if they have concerns about the overall management of their baby, and to communicate this clearly upon admission.<li id=appendix-2_outcome-list_e1c>A full response to each lettered point above.</ol><li id=appendix-2_outcome-list_e2 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#nnu_2" title="Go to complaint section">Nursing</a><ol><li id=appendix-2_outcome-list_e2a>A full response to each lettered point.</ol><li id=appendix-2_outcome-list_e3 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#nnu_3" title="Go to complaint section">Communication & culture</a><ol><li id=appendix-2_outcome-list_e3a>A detailed explanation of how the Neonatal Unit is planning to work towards family-centred care in line with the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Bliss Charter standards</span><span class=tt-s1_tooltip><span class=tt-s1_title>Bliss Charter standards</span><span class=tt-s1_text>See <a href=/p/whos-who.html#bliss title="Who’s Who entry – Bliss">Who’s Who entry</a></span></span></span> and other guidance for good practice.<li id=appendix-2_outcome-list_e3b>A detailed explanation of how the Neonatal Unit is planning to work towards shared decision-making between clinicians and parents as a standard practice, in line with the Bliss Charter standards and other guidance for good practice.<li id=appendix-2_outcome-list_e3c>An acknowledgement that, regardless of intent, the Neonatal Unit failed to provide family-centred care to Rumer and ourselves, and an explanation as to why this failed.<li id=appendix-2_outcome-list_e3d>An acknowledgement that, regardless of intent, the Neonatal Unit failed to offer us full shared decision-making about Rumer’s care, in particular in relation to the decision-making around management of oxygen desaturations and work of breathing, and an explanation as to why this came about.<li id=appendix-2_outcome-list_e3e>An explanation of the consent policies on the Neonatal Unit, including:<ol><li id=appendix-2_outcome-list_e3e-i>their content<li id=appendix-2_outcome-list_e3e-ii>an explanation of the basis for their content, for example:<ol><li id=appendix-2_outcome-list_e3e-ii-1>why consent is or is not required for a particular procedure<li id=appendix-2_outcome-list_e3e-ii-2>why consent sometimes needs to be written and other times verbal<li id=appendix-2_outcome-list_e3e-ii-3>why consent is assumed for repeated procedures<li id=appendix-2_outcome-list_e3e-ii-4>what provision there is for withdrawal of consent<li id=appendix-2_outcome-list_e3e-ii-5>etc.</ol></ol><li id=appendix-2_outcome-list_e3f>A detailed response to point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#nnu_3b-i" title="Go here">3.b)i</a> (page 32).<li id=appendix-2_outcome-list_e3g>An explanation of how the unit is working towards the provision of informed choice for parents in relation to all aspects of their baby’s care.<li id=appendix-2_outcome-list_e3h>A response to point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#nnu_3a-v" title="Go here">3.a)v</a> (page 32).</ol></ol><li id=appendix-2_outcome-list_f class=non-existent><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">BLYTON WARD</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#blyton-ward title="Who’s Who entry">paediatric ward</a> at which Rumer spent a few weeks</span></span></b><ol><li id=appendix-2_outcome-list_f1><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#blyton-ward_1" title="Go to complaint section">Infection control</a><ol><li id=appendix-2_outcome-list_f1a>An explanation of the infection control policy relating to <b class=alter_own>Blyton Ward</b> and how it is intended to mitigate the risk posed to high-risk children.<li id=appendix-2_outcome-list_f1b>An acknowledgement that infection control practices on the ward were inadequate to prevent Rumer contracting <abbr>RSV</abbr>.<li id=appendix-2_outcome-list_f1c>A commitment to improve infection control in order to prevent other children suffering a similar fate to Rumer, and details of how this will be achieved.<li id=appendix-2_outcome-list_f1d>An acknowledgement that we were not adequately informed of the risks to Rumer posed by infection on the ward, either before or during her stay.<li id=appendix-2_outcome-list_f1e>A commitment to informing parents as early as possible of the risk of infection, including a individualised assessment of the resulting risk to their child, so that they may make informed decisions.</ol></ol><li id=appendix-2_outcome-list_g class=non-existent><span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">PAEDIATRIC INTENSIVE CARE UNIT (<abbr>PICU</abbr>)</span><span class=tt-s1_tooltip><span class=tt-s1_title>Paediatric Intensive Care Unit (<abbr>PICU</abbr>)</span><span class=tt-s1_text><a href=/p/whos-who.html#picu title="Who’s Who entry – PICU">Who’s Who entry</a></span></span></span><ol><li id=appendix-2_outcome-list_g1><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#picu_1" title="Go to complaint section">Medical care</a><ol><li id=appendix-2_outcome-list_g1a>A commitment to implementing a <q class=q_single>named <abbr>PICU</abbr> consultant</q> system, with the opportunity for parents of long-term or critical <abbr>PICU</abbr> patients to have regular discussions with their child’s consultant (or a named deputy) about the plan of care for their child and any concerns they may have.<li id=appendix-2_outcome-list_g1b>An explanation of the current policy and practice around implementing, communicating and managing limited resuscitation plans on <abbr>PICU</abbr>.<li id=appendix-2_outcome-list_g1c>An explanation of how this went wrong for Rumer.<li id=appendix-2_outcome-list_g1d>A commitment to ensuring all limited resuscitation plans are fully discussed, quickly and clearly put in place once agreed, and for both scope <em>and purpose</em> of each individual plan to be communicated to and fully understood by all relevant members of staff.</ol><li id=appendix-2_outcome-list_g2 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#picu_2" title="Go to complaint section">Nursing</a><ol><li id=appendix-2_outcome-list_g2a>A full response to all elements of point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#picu_2a" title="Go here">2.a)</a> (page 41).<li id=appendix-2_outcome-list_g2b>An explanation of why, given our objections (detailed under point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#picu_2b-i" title="Go here">2.b)i</a>, page 43), team nursing was considered to be in the best interests of Rumer and/or ourselves.<li id=appendix-2_outcome-list_g2c>An apology for the failure to address our concerns and the resulting negative impact on Rumer and on ourselves.<li id=appendix-2_outcome-list_g2d>An commitment from the unit to formally evaluate the practice of team nursing on <abbr>PICU</abbr> and implement improvements in line with the outcome of the evaluation.</ol><li id=appendix-2_outcome-list_g3 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#picu_3" title="Go to complaint section">Communication & culture</a><ol><li id=appendix-2_outcome-list_g3a>An acknowledgement that the team’s concerns about Rumer’s progress should have been communicated to us earlier.<li id=appendix-2_outcome-list_g3b>A commitment to fully informing parents of concerns as soon as they arise and involving them in all care-planning discussions about their child.<li id=appendix-2_outcome-list_g3c>A commitment to fully informing parents of all errors relating to their child’s care, however minor, as soon as possible.</ol><li id=appendix-2_outcome-list_g4 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#picu_4" title="Go to complaint section">Care during Rumer’s final 24 hours</a><ol><li id=appendix-2_outcome-list_g4a>A full response to each lettered point.<li id=appendix-2_outcome-list_g4b>An acknowledgement that the care Rumer received on 31<sup>st</sup> December was inadequate and caused her unnecessary and prolonged suffering.<li id=appendix-2_outcome-list_g4c>An apology for the failures to recognise Rumer’s deterioration and to take our concerns seriously, and for the unnecessarily difficult situation that placed us in.<li id=appendix-2_outcome-list_g4d>An explanation of how the unit will ensure that deteriorations in children’s conditions will be identified and acted upon in a timely fashion in order to avoid the issues we encountered.</ol></ol><li id=appendix-2_outcome-list_h class=non-existent><span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">PAEDIATRIC CARDIOLOGY</span><span class=tt-s1_tooltip><span class=tt-s1_title>Paediatric Cardiology</span><span class=tt-s1_text><a href=/p/whos-who.html#paediatric-cardiology title="Who’s Who entry – Paediatric Cardiology">Who’s Who entry</a></span></span></span><ol><li id=appendix-2_outcome-list_h1><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#paediatric-cardiology_1" title="Go to complaint section">Cardiology issues</a><ol><li id=appendix-2_outcome-list_h1a>A detailed written explanation from a senior member of the Cardiology team of the department’s conduct in relation to Rumer, including full responses to each lettered point.<li id=appendix-2_outcome-list_h1b>Depending on the content of the written response, it may be appropriate for us to meet with the relevant teams (including Cardiology) and/or individuals to discuss what went wrong in Rumer’s case and how it will be avoided in the future.</ol></ol><li id=appendix-2_outcome-list_i class=non-existent><span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">PAEDIATRIC PALLIATIVE CARE</span><span class=tt-s1_tooltip><span class=tt-s1_title>Paediatric Palliative Care</span><span class=tt-s1_text><a href=/p/whos-who.html#paediatric-palliative-care-team title="Who’s Who entry – Paediatric Palliative Care Team">Who’s Who entry</a></span></span></span><ol><li id=appendix-2_outcome-list_i1><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#paediatric-palliative-care_1" title="Go to complaint section">Palliative Care issues</a><ol><li id=appendix-2_outcome-list_i1a>A detailed explanation of what the Trust sees as the role of the Paediatric Palliative Care team.<li id=appendix-2_outcome-list_i1b>A detailed explanation of what the Trust would have expected the Paediatric Palliative Care team to provide to Rumer.<li id=appendix-2_outcome-list_i1c>Copies of all notes taken by the Paediatric Palliative Care team in relation to Rumer/ourselves. If notes relating to a particular meeting <abbr>etc.</abbr> are not available, an explanation as to why.<li id=appendix-2_outcome-list_i1d>An acknowledgement from Dr <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Blackman</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the Paediatric Palliative Care <a href=/p/whos-who.html#tegan-blackman title="Who’s Who entry">consultant</a></span></span></b> that some of her comments were inappropriate and insensitive. We would appreciate an apology if she feels moved to do so.<li id=appendix-2_outcome-list_i1e>An acknowledgement from the Trust that the behaviour we experienced from the Paediatric Palliative Care team was inappropriate and unacceptable.<li id=appendix-2_outcome-list_i1f>Details of any actions the Trust has taken or will take to ensure that other families do not experience similar lapses in professional behaviour.<li id=appendix-2_outcome-list_i1g>Full responses to points <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#paediatric-palliative-care_1b" title="Go here">b)</a>, <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#paediatric-palliative-care_1c" title="Go here">c)</a> and <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#paediatric-palliative-care_1e" title="Go here">e)</a> (pages 55, 56 and 57 respectively).</ol></ol><li id=appendix-2_outcome-list_j class=non-existent>OVERALL<ol><li id=appendix-2_outcome-list_j1><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_1" title="Go to complaint section">Trisomy 18</a><ol><li id=appendix-2_outcome-list_j1a>Full explanations from the following departments of what they have learned from Rumer’s case and how this will change their management of future children presenting with a pre- or postnatal trisomy 18 diagnosis:<ol><li id=appendix-2_outcome-list_j1a-i><span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Fetal Medicine</span><span class=tt-s1_tooltip><span class=tt-s1_title>Fetal Medicine</span><span class=tt-s1_text><a href=/p/whos-who.html#fmu title="Who’s Who entry – Fetal Medicine Unit">Who’s Who entry</a></span></span></span>/<span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Obstetrics</span><span class=tt-s1_tooltip><span class=tt-s1_title>Obstetrics</span><span class=tt-s1_text><a href=/p/whos-who.html#obstetrics title="Who’s Who entry">Who’s Who entry</a></span></span></span><li id=appendix-2_outcome-list_j1a-ii>Neonatology<li id=appendix-2_outcome-list_j1a-iii><span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">General Paediatrics</span><span class=tt-s1_tooltip><span class=tt-s1_title>General Paediatrics</span><span class=tt-s1_text><a href=/p/whos-who.html#general-paediatrics title="Who’s Who entry">Who’s Who entry</a></span></span></span><li id=appendix-2_outcome-list_j1a-iv>PICU</ol><li id=appendix-2_outcome-list_j1b>Copies of:<ol><li id=appendix-2_outcome-list_j1b-i>The Trust’s current policy on counselling parents whose child has a new diagnosis of trisomy 18.<li id=appendix-2_outcome-list_j1b-ii>Any other policies that reference trisomy 18 directly or indirectly.</ol></ol><li id=appendix-2_outcome-list_j2 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_2" title="Go to complaint section">Working with parents</a><ol><li id=appendix-2_outcome-list_j2a>A full response to point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_2a" title="Go here">a)</a> (page 61)<li id=appendix-2_outcome-list_j2b>A full response to all elements of point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_2b" title="Go here">b)</a> (page 62)<li id=appendix-2_outcome-list_j2c>An explanation of why the Trust does not require either a parental signature or an explanation as to why it is not available when a limited resuscitation plan is implemented for a child.<li id=appendix-2_outcome-list_j2d>A commitment to require parental and/or patient’s signatures (as appropriate), or an explanation as to why such signatures are not possible, for all paediatric limited resuscitation plans.<li id=appendix-2_outcome-list_j2e>A full response to point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_2c" title="Go here">c)</a> (page 63).<li id=appendix-2_outcome-list_j2f>A full explanation as to why a co-ordinated approach to Rumer’s care was not agreed by the Trust antenatally as discussed under point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_2c-v" title="Go here">2.c)v</a> (page 63).<li id=appendix-2_outcome-list_j2g>A full response to points <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_2d-i" title="Go here">2.d)i</a> and <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_2d-ii" title="Go here">2.d)ii</a> (pages 64 and 65 respectively).<li id=appendix-2_outcome-list_j2h>An apology from the Trust for how our disagreement with the medical teams was handled.<li id=appendix-2_outcome-list_j2i>A commitment to ensuring staff are familiar with and routinely follow professional and Trust guidance for situations in which parents/potential parents disagree with the proposed care of their child.<li id=appendix-2_outcome-list_j2j>A full response to all elements of point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_2e" title="Go here">e)</a> (page 65).<li id=appendix-2_outcome-list_j2k>A commitment to giving parents open access to their child’s medical records.<li id=appendix-2_outcome-list_j2l>An explanation as to how the Trust will improve its working with parents, particularly in the areas of shared decision-making, informed consent, co-ordination of care and information management.</ol><li id=appendix-2_outcome-list_j3 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_3" title="Go to complaint section">Professionals’ meetings</a><ol><li id=appendix-2_outcome-list_j3a>An explanation of the official Trust policy on the attendance of patients/parents at multidisciplinary and professionals’ meetings.<li id=appendix-2_outcome-list_j3b>The opportunity to meet with someone who was present at the 29<sup>th</sup> July 2015 multidisciplinary meeting about Rumer’s care who is able to feed back to us about the discussions that took place and conclusions reached at that meeting.<li id=appendix-2_outcome-list_j3c>An explanation of the Trust policy on documenting professionals’ meetings.<li id=appendix-2_outcome-list_j3d>A commitment from the Trust to provide sufficient administrative support to enable all professionals’ meetings to be adequately documented.<li id=appendix-2_outcome-list_j3e>Full, detailed responses to each individual element of point <a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_3c" title="Go here">c)</a> (page 68).<li id=appendix-2_outcome-list_j3f>The opportunity to meet with an appropriate member of the management team to feed back our concerns about the 14<sup>th</sup> December 2015 multidisciplinary meeting.</ol><li id=appendix-2_outcome-list_j4 class=non-existent><a href="/[[year]]/[[month]]/complaint-part-[[part no]].html#overall_4" title="Go to complaint section">Other issues</a><ol><li id=appendix-2_outcome-list_j4a>Full responses to each lettered point.</ol></ol></ol><p><b class=alter_own><b>Note:</b> The desired outcomes that relate to parts of the complaint that have not yet been published are not shown. This appendix will be updated as publication of the complaint progresses.</b></blockquote></div><!-- SHARE BUTTONS (bottom) --><div class=sharethis_postbottom></div><!-- Both --><div class=addthis_inline_share_toolbox_dkmm></div><!-- Desktop --><div class=addthis_inline_share_toolbox_dkmm_dc83></div><!-- Mobile --><!-- SERIES NAVIGATION FOOTER --><div class="series-nav sn_wrapper_outer"><div class=sn_wrapper_inner><span class=sn_prev><a href=/2017/12/complaint-part-2.html title="Go to previous part">2</a> </span><span class=sn_ref><a href=/p/complaint.html title="Contents page listing all parts in the series"></a> <span class=sn_separator></span> <a href=/p/whos-who.html title="List of people and organisations mentioned, with brief descriptions"></a> </span><span class=sn_next><a href=/2018/02/complaint-part-4.html title="Go to next part">4</a></span></div></div><!-- POST BODY ENDS -->Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-3251362865841116422017-12-12T22:09:00.001+00:002019-07-11T02:40:34.289+01:00Complaint about Rumer’s care, part 2<!-- POST BODY STARTS --><!-- POST CSS --><style scoped>#appendix-1 .lett_sender{margin-right:15%}#appendix-1 .lett_date{margin:2.6em 0}#appendix-1 .lett_signoff{margin:2.6em 0 5.2em}#appendix-1 .lett_sigblock{display:inline-block;width:49%;margin:0}#appendix-1 .lett_signature{margin:.4em 0 -.4em}.mobile #appendix-1 .lett_signature{margin:.1em 0 -.1em}#appendix-1 .lett_copy_email-address{margin-top:1.3em}</style><!-- POST SUBTITLE --><h3 class=postsubtitle>Covering letter (Appendix 1)</h3><!-- SHARE BUTTONS (top) --><div class=addthis_inline_share_toolbox_3kw8></div><!-- Desktop --><div class=addthis_inline_share_toolbox_hdjj></div><!-- Mobile --><!-- POST TOC --><div class=post-toc><details><summary class=pp-toc_title><div></div></summary><ul class=pp-toc_list><li class=pp-toc_item_begin><a href=#article-start title="Go to beginning of article"><span></span></a><li class=pp-toc_item_h4><a href=#text-box_appendix-1 title="Go here">Appendix 1: Covering letter with this document</a></ul></details></div><!-- POST TEXT --><p id=article-start>First of all, apologies to anyone who’s been waiting for us to get on with publishing our complaint as promised in October! We had some website issues to deal with<span class=dash_norm></span>these are on track now and further updates should follow more quickly.<p id=para-2><a href=#text-box_appendix-1 title="Go here">Below</a> is the covering letter we sent with our (very long!) complaint about Rumer’s care (also included in the complaint document itself as <i>Appendix 1</i>).</p><a name='more'></a><p id=para-3>While we had considered making a complaint at various points during Rumer’s life<span class=dash_norm></span>and, in fact, before she was born<span class=dash_norm></span>we had not done so. Mostly because things had improved, or we were keen to work with the clinicians who would be or were caring for Rumer and we didn’t feel that a complaint would further our goal of getting the best possible care for her.<p id=para-4>After Rumer died, we had a number of unresolved concerns regarding her care. We had four meetings with various clinicians involved in her case: a <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>PICU</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>PICU</abbr></span><span class=tt-s1_text>Paediatric Intensive Care Unit</span></span></span> consultant, a Neonatal consultant, a Paediatric Cardiologist and a Palliative Care consultant. These meetings did answer some of our queries<span class=dash_norm></span>in fact we found most of them engaging and productive<span class=dash_norm></span>but often they raised as many new questions as they answered. As we continued to have unresolved concerns, we began to consider making a formal complaint.<p id=para-5>For us, the main purpose of the complaint was to finally get answers (I accept we were woefully naïve!) or at least to get a better picture of what actually happened. We also wanted those who had been on the <q class=q_generic>other side</q> of caring for Rumer, many of whom had seemingly found us so perplexing and/or unreasonable, to understand:<ul class=attached_btm><li>the wider situation outside their individual areas of practice<li>our perspective of what had happened<li>our grievances</ul><p id=para-6>In the early period after Rumer’s death we had high hopes that the hospital would wish to engage with us to improve both parties’ understanding and to work toward improving their handling of similar situations that would no doubt arise with other parents in the future<span class=dash_norm></span>both around the ethical issues surrounding trisomy 18 and more general themes such as communication and trust. Sadly, despite the generally positive early meetings and the sense from some staff that they too wanted this, it was not to be.<p id=para-7>We were concerned we would not get the complaint in within the <q class=q_generic>12 months after finding out about the problem</q> timeframe specified in the <a href=https://www.nhs.uk/nhsengland/complaints-and-feedback/pages/nhs-complaints.aspx title="NHS Choices page – The NHS Complaints Procedure">NHS Complaints Procedure</a>, so we approached <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>PALS</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>PALS</abbr></span><span class=tt-s1_text><a href=/p/whos-who.html#pals title="Who’s Who entry">Patient Advice and Liaison Service</a></span></span></span>. They contacted the Complaints department, who agreed we could have until December 2016 to put in our complaint: this is the <q class=q_specific>generous timeframe</q> mentioned in our letter.<p id=para-8>We had approached <a href=/p/whos-who.html#information-governance title="Who’s Who entry">Information Governance</a> very soon after Rumer’s death in order to obtain copies of all documentation relating to her or to us. We received the documents bit by bit over a period of several months (obtaining the documents was a saga in itself) and in October 2016, as we were finalising the complaint in preparation for sending it a few days later, we received a large batch of selected emails with the promise of more to follow after redaction. We knew the outstanding documents may raise additional concerns when they arrived and wanted to be clear that, if so, we may add an addendum to the complaint at a future date. In the event we did so in March 2017.<p id=para-9>By the time we wrote the complaint, we were feeling angry and frustrated: the hospital we thought had treated our daughter and us badly for a long time in our hour of need (despite some excellent parent<span class=dash_connection></span>professional working also), but subsequently largely got on board, with a desire to improve, now looked to be playing much more of a manipulation game that we had thought. The talk of collaboration had evaporated; the answers to our questions had become more guarded; opportunities to debate the ethical issues around trisomy 18 more widely had been shut down one by one; extreme reluctance had been shown in providing the documents containing Rumer’s and our personal data; and to cap it all, both the post-death review meetings and some of the documents we were finally seeing were alarming in terms of what they seemed to illustrate had been going on at the time.<p id=para-10>This anger and frustration probably shows through in the complaint documents, parts of which seem somewhat petty and unreasonable even to us when we read them back now. Other parts, however, are as damning as ever and we would dearly love to understand how they came about and<span class=dash_norm></span>even though it may be a pipe dream<span class=dash_norm></span>to find some common ground and a positive way forward for ourselves, the professionals, the hospital trust, and indeed the NHS and country as a whole so that others in the future may not suffer such a difficult, fraught, damaging experience even when disagreements are so profound.</p><!-- Text box (style 1) - Blockquote - Appendix 1: Covering letter with this document --><div class="tb-s1_centre tb_blockquote"><div class=tb-s1_type-label id=text-box_appendix-1></div><div class=tb-s1_title><h4><cite>Concerns about the care of Rumer Gomez</cite></h4><h5><b>Appendix 1:</b> Covering letter with this document</h5></div><blockquote class="carc-doc_apdx tb-s1_text" id=appendix-1><div class=letter><div class=lett_header><div class=lett_sender><div class=lett_sender_address><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Our address</span><span class=tt-s1_tooltip><span class=tt-s1_title></span></span></b></div></div><div class=lett_recipient><div class=lett_recipient_name><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Estelle Lawlor</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for <a href=/p/whos-who.html#estelle-lawlor title="Who’s Who entry">CLHT Chief Executive <abbr>no.</abbr> 2</a></span></span></b></div><div class=lett_recipient_role>Chief Executive</div><div class=lett_recipient_org><b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Central London Hospital NHS Foundation Trust</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#clht title="Who’s Who entry">hospital trust</a> that provided most of Rumer’s treatment</span></span></b></div><div class=lett_recipient_address><b class=alter_own>Address</b></div></div><div class=lett_date>24<sup>th</sup> October 2016</div></div><div class=lett_body id=appendix-1_letter-text><div class=lett_salutation>Dear Ms. <b class=alter_own>Lawlor</b>,</div><div class=lett_regarding>RE: Rumer Gomez, <abbr>DOB</abbr> 24/9/15, Hospital no. <b class=alter_own>redacted</b></div><p id=appendix-1_para-1>We, Helen Roper & Chris Gomez, are writing to express our concerns about the care of our daughter Rumer at <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Central London Hospital</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#clh title="Who’s Who entry">adult hospital</a> that provided Helen’s maternity care</span></span></b> and <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">London Paediatric Hospital</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#london-paeds title="Who’s Who entry">children's hospital</a> that provided most of Rumer’s care</span></span></b>. We would like you to carry out a full investigation into our concerns and provide a response in accordance with the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>NHS</abbr> Complaints Procedure</span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>NHS</abbr> Complaints Procedure</span><span class=tt-s1_text>See <a href=https://www.nhs.uk/nhsengland/complaints-and-feedback/pages/nhs-complaints.aspx title="NHS Choices – The NHS complaints procedure">NHS Choices page</a> for information about the procedure</span></span></span>.<p id=appendix-1_para-2>Helen became pregnant in January 2015 and accessed antenatal care at <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>CLH</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Central London Hospital</span></span></b>. At the 20-week scan, it was identified that Rumer had diaphragmatic and cardiac anomalies, and subsequently, at 23 weeks gestation, Rumer was diagnosed with trisomy 18 (Edwards’ syndrome). We decided against a ‘palliative care only’ approach for Rumer, opting instead for active treatment as clinically appropriate. After a discussion with the <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Clinical Ethics Committee (<abbr>CEC</abbr>)</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#cec title="Who’s Who entry">trust’s ethics committee</a> for examining issues that arose in clinical practice</span></span></b>, the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Neonatal Unit</span><span class=tt-s1_tooltip><span class=tt-s1_title>Neonatal Unit</span><span class=tt-s1_text>See <a href=/p/whos-who.html#nnu title="Who’s Who entry – Neonatal Unit">Who’s Who entry</a> for details</span></span></span> agreed to this approach.<p id=appendix-1_para-3>Rumer was born at <b class=alter_own><abbr>CLH</abbr></b> on 24<sup>th</sup> September 2015 and transferred to the Neonatal Unit where she spent six weeks. She was discharged home with support from the <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Neonatal Community Team</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#neonatal-community-team title="Who’s Who entry">team</a> that managed the transition from hospital to home for babies who were discharged from the Neonatal Unit</span></span></b>. Five days later she stopped breathing at home and was taken by ambulance to <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>A&E</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>A&E</abbr> (Thames Hospital)</span><span class=tt-s1_text><a href=/p/whos-who.html#a-e_thames-hospital title="Who’s Who entry">Accident & Emergency department</a></span></span></span> at <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Thames Hospital</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#thames-hospital title="Who’s Who entry">closest hospital</a> to our home</span></span></b>. After a few days there, she was transferred to <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick="">Blyton Ward</span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Pseudonym for the <a href=/p/whos-who.html#blyton-ward title="Who’s Who entry">general paediatric ward</a> at London Paediatric Hospital</span></span></b> at <b class="tt-s1_wrapper tt-s1_alter_own"><span class=tt-s1_anchor onclick=""><abbr>London Paeds</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title></span><span class=tt-s1_text>Casual name for London Paediatric Hospital</span></span></b> for further investigations. She was discharged home after two weeks, on 26<sup>th</sup> November, but was re-admitted via <b class=alter_own><abbr>CLH</abbr></b> <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>A&E</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>CLH</abbr> <abbr>A&E</abbr></span><span class=tt-s1_text>See <a href=/p/whos-who.html#a-e_clh title="Who’s Who entry – CLH A&E">Who’s Who entry</a> for details</span></span></span> later that night, having contracted <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Respiratory Syncytial Virus (<abbr>RSV</abbr>)</span><span class=tt-s1_tooltip><span class=tt-s1_title><abbr>RSV</abbr></span><span class=tt-s1_text>Common winter virus that is serious for babies with existing compromises. See <a href=https://www.gov.uk/government/publications/respiratory-syncytial-virus-rsv-symptoms-transmission-prevention-treatment/respiratory-syncytial-virus-rsv-symptoms-transmission-prevention-treatment title="PHE guidance – RSV: symptoms, transmission, prevention, treatment">Public Health England guidance</a> for details.</span></span></span>. She spent another week in <b class=alter_own>Blyton Ward</b>’s <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>HDU</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title>High Dependency Unit</span><span class=tt-s1_text>Unit providing an intermediate level of care between that of a normal ward and Intensive Care</span></span></span> before deteriorating and being transferred to <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick=""><abbr>PICU</abbr></span><span class=tt-s1_tooltip><span class=tt-s1_title>Paediatric Intensive Care Unit</span><span class=tt-s1_text>Intensive Care Unit for children<span class=dash_norm></span>see <a href=/p/whos-who.html#picu title="Who’s Who entry – London Paeds’ PICU">Who’s Who entry</a> for details of <abbr>London Paeds</abbr>’ <abbr>PICU</abbr></span></span></span> in early December. She died in <abbr>PICU</abbr> on 1<sup>st</sup> January 2016.<p id=appendix-1_para-4>We have specific complaints about some departments’ management of Rumer’s care. There were also some general issues which recurred across many departments. Please see the attached document titled <cite class=pstyle_complaint_doc-title>Concerns about the care of Rumer Gomez</cite> which details our concerns.<p id=appendix-1_para-5>We are currently reviewing documents recently received from the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Information Governance</span><span class=tt-s1_tooltip><span class=tt-s1_title>Information Governance</span><span class=tt-s1_text>Department managing access to documents<span class=dash_norm></span>see <a href=/p/whos-who.html#information-governance title="Who’s Who entry – Information Governance">Who’s Who entry</a> for details</span></span></span> department and are awaiting further documents. We hope these will not raise any additional concerns. If they do, we may need to raise them at a future date. However, we wanted to submit this complaint now as we wished to comply with the generous timeframe set out by the <span class=tt-s1_wrapper><span class=tt-s1_anchor onclick="">Complaints team</span><span class=tt-s1_tooltip><span class=tt-s1_title>Complaints team</span><span class=tt-s1_text>Department for managing complaints about CLHT<span class=dash_norm></span>see <a href=/p/whos-who.html#complaints title="Who’s Who entry – Complaints">Who’s Who entry</a> for details</span></span></span> and to enable timely investigation of our concerns.<p id=appendix-1_para-6>We would be grateful for communication to take place via email, copying us both in. Our email addresses are <b class=alter_own>redacted</b> and <b class=alter_own>redacted</b>.<p id=appendix-1_para-7>We look forward to hearing from you.<div class=lett_signoff><div class=lett_signoff_words>Yours sincerely,</div><div class=lett_sigblock><div class="lett_signature signature"></div><div class=lett_signoff_name>Chris Gomez</div></div><div class=lett_sigblock><div class="lett_signature signature"></div><div class=lett_signoff_name>Helen Roper</div></div></div></div><div class=lett_copies id=appendix-1_copies><h6 class=lett_copies_hdg>Copies</h6><div class=lett_copy><div class=lett_copy_name>Complaints Department</div><div class=lett_copy_address><b class=alter_own>Address</b></div><div class=lett_copy_email-address><b class=alter_own>Email address</b></div></div></div></div></blockquote></div><!-- SHARE BUTTONS (bottom) --><div class=sharethis_postbottom></div><!-- Both --><div class=addthis_inline_share_toolbox_dkmm></div><!-- Desktop --><div class=addthis_inline_share_toolbox_dkmm_dc83></div><!-- Mobile --><!-- SERIES NAVIGATION FOOTER --><div class="series-nav sn_wrapper_outer"><div class=sn_wrapper_inner><span class=sn_prev><a href=/2017/10/complaint-part-1.html title="Go to previous part">1</a></span><span class=sn_ref><a href=/p/complaint.html title="Contents page listing all parts in the series"></a><span class=sn_separator></span><a href=/p/whos-who.html title="List of people and organisations mentioned, with brief descriptions"></a></span><span class=sn_next><a href=/2018/02/complaint-part-3.html title="Go to next part">3</a></span></div></div><!-- POST BODY ENDS -->Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-213041984619043061.post-38858262958346257242017-10-24T22:36:00.000+01:002018-03-05T09:45:28.513+00:00Complaint about Rumer's care, part 1<!-- POST BODY STARTS --><!-- POST SUBTITLE --><h3 class=postsubtitle>One year ago today...</h3><!-- SHARE BUTTONS (top) --><div class=addthis_inline_share_toolbox_3kw8></div><!-- Desktop --><div class=addthis_inline_share_toolbox_hdjj></div><!-- Mobile --><!-- POST TEXT --><p id=article-start>Today, 24th October 2017, marks a double anniversary. Not only is it Rumer's 25-month birthday, it is also one year today since we submitted a complaint to the hospitals that provided her care.<p id=para-2>After Rumer died, we made requests under the Data Protection and Access to Medical Records acts for not only Rumer's hospital notes, but also all meeting minutes, emails and so on pertaining to her and/or us. It took us a long time to get them all and they came piecemeal and in no particular order. Even now, it seems unlikely that we have all the documents there were. For example, it has been claimed that one significant meeting was not minuted and that consultant meetings are routinely unminuted.</p><a name='more'></a><p id=para-3>The documents that we did receive raised serious concerns for us, which added to the concerns we already had from our own experience of Rumer's care. When we finished compiling the complaint, it totalled 74 pages. It includes concerns about communication, attitude and decision-making.<p id=para-4>We continue to await a response. We were offered a choice of three hospital trusts to conduct an external investigation; however, as of today, there has still not been an agreement with our chosen trust to do so and they wish for us to select one of the other two.<p id=para-5>We have chosen to publish our complaint in full in the coming posts, since while some of the issues raised are particular to Rumer's case, many families keen to pursue an active treatment course for their newborn with trisomy 18 report similar (sometimes worse) experiences. The general themes of our complaint, which perhaps could be summed up as <strong>collusion and exclusion</strong>, seem to resonate even more widely with many parents of very sick children encountering often almost identical problems.<p id=para-6>We would love to hear your experiences and comments.<p id=para-7>As we have not yet received a response from the hospitals concerned and we do not wish to prejudice the investigations, we shall not be making any additional comments on our complaint at this time. After publishing the complaint, we will record how it was dealt with and will continue to keep you updated through what looks like it might be a very long process.<p id=para-8>As usual, we have made a reasonable effort to anonymise the trust and the individuals concerned, with the exceptions of ourselves, Rumer and anyone who does not wish to be anonymised.</p><!-- SHARE BUTTONS (bottom) --><div class=sharethis_postbottom></div><!-- Both --><div class=addthis_inline_share_toolbox_dkmm></div><!-- Desktop --><div class=addthis_inline_share_toolbox_dkmm_dc83></div><!-- Mobile --><!-- SERIES NAVIGATION FOOTER --><div class="series-nav sn_wrapper_outer"><div class=sn_wrapper_inner><span class="hidden sn_prev"><a href=/ title="Go to previous part">0</a></span><span class=sn_ref><a href=/p/complaint.html title="Contents page listing all parts in the series"></a><span class=sn_separator></span><a href=/p/whos-who.html title="List of people and organisations mentioned, with brief descriptions"></a></span><span class=sn_next><a href=/2017/12/complaint-part-2.html title="Go to next part">2</a></span></div></div><!-- POST BODY ENDS -->Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com3tag:blogger.com,1999:blog-213041984619043061.post-27017742271837397432017-07-12T16:04:00.000+01:002017-11-14T16:01:18.504+00:00The myth of the irrational parent<!-- Post subtitle -->
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Will parents really do anything to save their child?
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<a href="https://www.theguardian.com/commentisfree/2017/jul/12/charlie-gard-doctors-speak-out-hospital-staff" target="_blank"><b>This article</b></a> by Zoe Williams in the Guardian today is just another in a long line of articles about the case of Charlie Gard saying exactly the same thing.<br />
<br />
The accepted message is:<br />
<ul>
<li>The doctors are dispassionate and able to accept that the child is desperately ill and there is nothing to be done.</li>
<li>The parents are desperate to save their child at any cost, will do anything at all to save him and are behaving in an irrational way; however this is okay <b>because any parent would do the same.</b></li>
</ul>
<br />
<a name='more'></a>I think the question is, would they? How many children die every day? How many children have treatment withdrawn from them? How many parents do you know of who have ended up in the European courts? I can count them on the fingers of one hand.<br />
<br />
The perhaps rather hard truth is that most parents will <i>not</i> do everything to save their child. In fact, some loving, caring parents will not do very much at all. In my time around the parents of children with severely life limiting illnesses, I have encountered parents who will not so much as write a letter to challenge the decision not to offer their child heart surgery, who will not so much as make a fuss when their very sick child is denied admission to PICU. I have seen many parents make the decision not to pursue further treatments for their child on the advice of medical teams without researching it further themselves and many, many more who have made the decision to withdraw or withhold treatment because they believed it would cause their child suffering without sufficient gain. <br />
<br />
Charlie Gard's parents are exceptional. Exceptional in that they are pursuing treatment in the face of an extraordinary level of opposition; exceptional in that they are prepared to go back to court again and again to get the treatment they think is right for their son; exceptional in that they will go so far to attempt to save their child's life.<br />
<br />
So if we accept that most parents in fact won't and don't do everything to save their child: are Charlie Gard's parents also just exceptionally irrational, exceptionally deluded? As a parent described by our medical teams as ‘irretrievably impossible’, I imagine that is how they are perceived by the people caring for their son. But I doubt it is how they actually are.<br />
<br />
The message in articles like the one above is that the medics and the courts are right and the parents are wrong. Our own palliative care consultant (in perhaps one of her most honest moments) told another doctor that she thought we wanted Rumer to suffer – and that is what most people think these parents want for their son: suffering for their own benefit. Few will come out and say it, but it is heavily implied: these parents want to save their son at his own expense.<br />
<br />
Do they? Or do they simply disagree as to what is in their child's best interests? What writers like Zoe Williams and the many lay people who call out either the parents or the medics (and indeed, all too often, medics and judges themselves) fail to recognise is that there is no right and wrong in a case like this. There isn't even a definite answer as to what is in Charlie Gard's best interests. The court isn't giving a definitive answer: it isn't guilty or not guilty, right or wrong. It is an opinion, not a final answer.<br />
<br />
The likelihood is that Charlie Gard's parents are acting in what they perceive to be his best interests, as are the medics, as are the courts. It is more than possible that they have different values than the medics and the courts. For example, research suggests that medics perceive those with profound intellectual disabilities to have a significantly impaired quality of life, simply by virtue of the fact of their disability. However, parents and carers of those with profound intellectual disabilities perceive the impact on quality of life to be far less.<br />
<br />
In a case like that of Charlie Gard, these value systems collide heavily. Medics are far less likely to see survival with long term intellectual disability (a best case scenario for treatment) as being ‘worth’ any suffering at all. Some parents however, feeling that quality of life is not impaired is or more mildly impacted by intellectual disability, may see a moderate to high amount of suffering to be ‘worth’ it for survival. The question of course is how would the child, unable to communicate his view, see it? Research among those with more moderate intellectual disabilities suggests that they perceive their quality of life to be considerably better than their medical teams do. They perhaps would take a different view on how much suffering is acceptable to ensure survival.<br />
<br />
Medics and parents may also differ in their beliefs around what constitutes futility. Different parents will have different views on what is a ‘good’, or ‘acceptable’ chance of benefit. When we argued that treatment would improve Rumer's chances of survival from 8% at 12 months to 25% at 12 months, we were arguing that, to us, that was a chance worth taking. Most of the medics – including those who were supportive – felt they would not themselves choose treatment for that chance. Many parents have also made a rational decision against treatment because they feel 25% is still too low a chance to opt for the inevitable suffering of treatment.<br />
<br />
What would you do if you were told that the chance of your child's survival was 1%; that there was a 50% chance your child would have profound intellectual disabilities if they survived, but that the treatment involved no suffering? What would you choose?<br />
<br />
Would your choice be different if the treatment involved minimal suffering? What if it involved significant suffering? What chance is worth significant suffering for you?<br />
<br />
If we asked 100 people these questions, we would get 100 different answers.<br />
<br />
In a case like Charlie Gard's, we have got an exceptional circumstance where perhaps 99 out of 100 people would not opt for treatment. But the one that would: are they wrong? Or do they just have a minority opinion? Is it always irrational to have a minority opinion? Is it always wrong?<br />
<br />
Also, remember that we are not dealing with such numbers. When we were expecting Rumer, we were asked what chance would be worth it for us? But of course there are no numbers; no answers like this. Suffering, too, is not quantified in numbers and is also a matter of opinion. Charlie Gard's parents and his medical team clearly differ in their views on how much suffering Charlie is enduring. The outcomes of treatment are rarely so certain as to be a 1% or 10% or 100% chance, especially with experimental treatments.<br />
<br />
So if we accept that in intense disagreements we are simply dealing with different values, different beliefs, rather than right and wrong: who should make the decision? There are those who believe that medical teams should have the ultimate call in all circumstances, to the extent they should be able to apply DNR orders to children without their parents' knowledge or consent. There are those who believe (and are vocal on the subject) that parents have ultimate rights to make the decision for their child, in all circumstances, including those where the child will die: for example, when a parent refuses a life-saving blood transfusion for a child.<br />
<br />
I can see the merits of that argument. However, we have decided in this country to opt for the ultimate opinion of a court. For a judge who does not know the child or parents or (hopefully) the doctors personally, to take into account all the evidence and come up with an answer. To state what ‘is in the child's best interests’: and that is carried through. There is a system of appeal for the parents and medics and when that is exhausted it is done.<br />
<br />
Is it a perfect system? No, of course not. It is another opinion, and the opinion of someone with his or her own values which may align better with one party or another. But for better or worse, it is our system. Perhaps we should accept however that parents who ‘lose’ are not wrong, not irrational; they are simply at odds with the values of the wider society. When we can acknowledge that disagreement is simply disagreement, we will be better able to understand and support parents who face losing their child because they do not share values with most of us.
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<div class="addthis_inline_share_toolbox_dkmm_dc83"></div> <!-- Mobile -->Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com1tag:blogger.com,1999:blog-213041984619043061.post-41358622739681129682016-08-14T15:00:00.000+01:002017-11-14T16:00:55.686+00:00Rumer's Story, part 20<h3 class="postsubtitle">
Neonatal & Palliative Care meeting: II
</h3>
<br />
<div class="postcontext">
Thursday 2nd July 2015<br />
27 weeks pregnant</div>
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Keen to bring the discussion back to treatment options, Chris proceeded to describe our understanding of the pregnancy risks and how we wanted to mitigate them (eg. close monitoring, c-section). He wanted to show our thinking about how to manage the obstetric problems, since that was what we were most familiar with at this point, thinking that that would give Ida an idea of the general approach we wanted to take in order to set the tone for the discussion about postnatal management. He also wanted to illustrate that we were realistic about the high rates of stillbirth and neonatal death; that we were going into this with our eyes open.<br />
<a name='more'></a><br />
However, Ida, seemingly thinking this irrelevant – perhaps partly because Chris, being nervous and under pressure, was a bit hesitant and waffly – interrupted quickly to remind us that “my job is after Baby's born”. Chris was taken aback, as he was about to describe interventions we were considering, and protested that he wanted to carry on with his point. (It was notable that whenever we approached the subject of interventions, Ida was keen to redirect the conversation.) But Ida continued without losing pace.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-j2jS6v5EckY/V63S7ezykgI/AAAAAAAAANU/UpKwMNUL0VA7mNAGC52hgopDGVydnYJEACLcB/s1600/2015-06-16%2B4D%2Bscan_Helen%2BRoper_9.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="4D scan picture of Rumer at 24 weeks" border="0" height="215" src="https://4.bp.blogspot.com/-j2jS6v5EckY/V63S7ezykgI/AAAAAAAAANU/UpKwMNUL0VA7mNAGC52hgopDGVydnYJEACLcB/s320/2015-06-16%2B4D%2Bscan_Helen%2BRoper_9.jpg" title="Rumer at 24 weeks" width="320" /></a></div>
<br />
I tried to take over from Chris to explain our thoughts about care for Rumer postnatally, but Ida didn't seem to want to go down that road either any more, once again interrupting to ask, “Has she got a name?” A few minutes' discussion ensued about Rumer's name, its spelling and origin, which celebrity child shared the name, how her parents chose the name...<br />
<br />
After a while, I managed to drag the conversation back to the subject of treatment for Rumer. I said that we knew her presentation was not straightforward trisomy 18, due to the cardiac problems, diaphragmatic hernia/eventration and likely pulmonary hypoplasia, and that she therefore was likely to do less well than a child with trisomy 18 without these additional issues. I explained that Evan Marshall (fetal cardiologist) didn't think the cardiac issues would present an immediate risk to her survival at birth, and that we understood from the research that this was generally the case with trisomy 18: that cardiac issues tend to be a longer-term problem but are not usually the cause of death in very young babies. Throughout this, Ida nodded along, at last allowing me to continue.<br />
<br />
I then brought up what turned out to be the controversial subject of <a href="https://en.wikipedia.org/wiki/Apnea" target="_blank">apnea</a> management. Dr Leigh willingly agreed that apnea was a common feature of trisomy 18. I mentioned some research we'd found that described the use of anti-epileptic drugs (AEDs) to manage some apneas in trisomy 18. I also noted that obstructive airway issues (eg. floppy airways, tongue blocking airways, etc.) were common in babies with trisomy 18, but were often misdiagnosed as central apneas (caused by the brain 'forgetting' to breathe).<br />
<br />
I went on to explain that we wanted to ‘play it by ear’: if Rumer was born in a very poor condition, there would be no point in pursuing “really active treatment”. If, however, she <i>was</i> doing ok, we would want to pursue active treatment, including <a href="https://uvahealth.com/services/surgery/intubation-and-mechanical-ventilation" target="_blank">intubation and ventilation</a>, and if she developed apneas, we'd want to evaluate and treat them appropriately rather than dismissing them ‘because she's got trisomy 18’. Chris, having recovered a little, agreed, stating that we wanted to evaluate and treat issues as they arose, unless it was “totally a ridiculous situation”, as would be done for any other baby.<br />
<br />
Realising that Ida and Tegan hadn't contributed anything for a while, and worrying that we were coming across too strongly at this point, I chimed in to explain that we weren't expecting long-term survival – not three years, not 20; maybe an extra month or two if we were lucky<span class="footnoteasterisk">*</span>.<br />
<br />
Again, discussion of active treatment seemed to make both doctors uncomfortable. Ida, clearly unsure how to respond to any of this, said, “Yeah. I mean I think we'll see Tegan's got a lot of experience with it because of her job and, for us, we see babies that <i>do</i> make it,” and turned to her colleague.<br />
<br />
<br />
<br />
<div class="footnote">
<span class="footnoteasterisk">*</span> We later came to realise that, with good medical care, significantly longer-term survival is not as unlikely as parents are often lead to believe. The field was new to us, and we had hoped for open discussion and information. But what happened instead, and continued to happen, was polarisation, in which we found ourselves pushed into opposition with the medics, leading to defensiveness rather than collaboration.</div>
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<a href="http://www.rumersrainbow.co.uk/2016/08/rumers-story-part-19.html">← Part 19</a>
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Part 21 →
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</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-42344610710374459992016-08-01T15:00:00.000+01:002017-11-14T16:00:39.903+00:00Rumer's Story, part 19<h3 class="postsubtitle">
Neonatal & Palliative Care meeting: I
</h3>
<br />
<div class="postcontext">
Thursday 2nd July 2015<br />
27 weeks pregnant</div>
<br />
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So we got back to the now very busy Fetal Medicine Unit (FMU) waiting room around 12:20 and waited. And waited, and waited. At 1pm, half an hour after the appointment should have begun, we spotted the neonatal consultant, Ida Leigh, chatting to George Donnachie; he ushered her into his room in his usual charming manner. And we waited; we remarked to each other that had we known it would be this long, we'd have had some lunch – by this time we were very hungry after our early start.<br />
<a name='more'></a><br />
At 1:30, Chris went to use the loo, and of course this is when Ida came to take us to the now very familiar FMU quiet room. He returned and we all went in together and the Palliative Care consultant, Tegan Blackman, introduced herself and the Palliative Care nurse, Jessica Duncalfe. We all shook hands and sat down and...silence. After several uncomfortable seconds, I said, “Do you want us to start?” Ida Leigh said, “Yes, tell us all about it. Tell us what's in your hearts, and minds.”<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-ROSp9wrfwFc/V50Wshy3aOI/AAAAAAAAAM4/5RrcTz32bcYtbJo7ikbjH_3G16jRZ-_kgCLcB/s1600/2015-06-16%2B4D%2Bscan_Helen%2BRoper%2B7.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Ultrasound picture of Rumer" border="0" height="219" src="https://2.bp.blogspot.com/-ROSp9wrfwFc/V50Wshy3aOI/AAAAAAAAAM4/5RrcTz32bcYtbJo7ikbjH_3G16jRZ-_kgCLcB/s320/2015-06-16%2B4D%2Bscan_Helen%2BRoper%2B7.jpg" title="Rumer at 24 weeks" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We wanted to explore all options for Rumer</td></tr>
</tbody></table>
<br />
A bit taken aback, I started recounting the cardiology appointment from earlier in the week, mentioning that Prof. Marshall had discussed the risks of cardiac surgery. I emphasised that we were thinking that we would like Rumer treated as any other baby would be, provided that the benefits weren't massively outweighed by the risks, and that we had spoken to cardiology along these lines. Ida and Tegan already seemed uncomfortable, with Tegan staying silent for long periods and Ida very hesitant, seemingly unsure of how to proceed.<br />
<br />
Eventually, Tegan ventured, “You seem to want things managed actively. To make sure we're understanding each other, what do you see as active?” At this stage, it was all quite new to us; we'd only recently begun to look into our options and what we might want. We certainly thought we'd want to avoid an entirely palliative approach, but weren't sure which interventions we might and might not want to opt for, largely because we hadn't had much time to explore the risks and benefits of different treatments, or even what sort of issues Rumer might present with. We'd hoped that this appointment would be an opportunity to understand more about the issues that children with trisomy 18 have. In retrospect, however, I think we already knew more about the nature of trisomy 18 than either of the doctors did.<br />
<br />
Tentatively, therefore, I said that we thought we would opt for active resuscitation, but that I wasn't quite sure how far we would want to go. At this, Ida interrupted to clarify that I was a midwife. She seemed to want to change the direction of the conversation in order to build a rapport. She tried to take us back to the time of diagnosis, asking what was “in [our] hearts and in [our] heads”, so they could “do what's best for [us] as a family unit.” She told us that she knew we'd been trying to have a baby for a while, and that it was a “totally devastating scenario.” Honestly, that wasn't really how we felt and we found it irrelevant to the question of resuscitation.<br />
<br />
So we described the long path to diagnosis via diaphragmatic hernia, heart defects and brain anomaly, and how we had gradually begun to suspect trisomy 18, and therefore the eventual diagnosis had not come as a complete shock. Eventually, Ida seemed to get bored with all of this, and said, “So now we've <i>got</i> a diagnosis; I'm presuming you'll have done all your reading.” At this stage we were still in our early stages of research and kept coming across new papers. So, enthused, I said, “We've got a lovely 2012 review on trisomy 18,” (<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520824/pdf/1750-1172-7-81.pdf" target="_blank">Cereda & Carey 2012 <span class="linkwarning">(PDF)</span></a>). Ida didn't seem terribly interested, however, declaring that she wanted to know how we saw things working out; what was important to us; and once again “what was in [our] hearts and heads”.<br />
<br />
It did not escape our notice that our discussion of resuscitation at birth had been deflected. We hoped we would be getting back to this later in the conversation.
<br />
<br />
<div style="text-align: center;">
<span style="float: left;"><b>
<a href="http://www.rumersrainbow.co.uk/2016/07/rumers-story-part-18.html">← Part 18</a>
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</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-80189785067827809572016-07-26T15:00:00.000+01:002017-11-20T15:46:34.332+00:00Non-Invasive Prenatal Testing<!-- POST BODY BEGINS -->
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<ul class="pp-toc_list">
<li class="pp-toc_item_begin"><a href="#article-start" title="Go to beginning of article"><span></span></a></li>
<li class="pp-toc_item_h4"><a href="#what-is-nipt" title="Go here">What is Non-Invasive Prenatal Testing?</a></li>
<li class="pp-toc_item_h4"><a href="#what-does-nipt-screen-for" title="Go here">What does <abbr>NIPT</abbr> screen for?</a></li>
<li class="pp-toc_item_h4"><a href="#postive-result-certainty" title="Go here">If I get a positive result on a non-invasive test, does that mean my baby definitely has trisomy 18?</a></li>
<li class="pp-toc_item_h4"><a href="#why-pay-for-nipt" title="Go here">If it is just a screening test, why am I paying £600 for it? Why not just have the normal <abbr>NHS</abbr> screening?</a></li>
<li class="pp-toc_item_h4"><a href="#false-positives" title="Go here">Can a positive <abbr>NIPT</abbr> result be wrong?</a></li>
<li class="pp-toc_item_h4"><a href="#false-negatives" title="Go here">Can a negative <abbr>NIPT</abbr> result be wrong?</a></li>
<li class="pp-toc_item_h4"><a href="#nipt-after-t18" title="Go here">My first baby had trisomy 18. Will the test detect my first baby's <abbr>DNA</abbr> in my blood, and does that make it more likely that I'll get a positive result?</a></li>
<li class="pp-toc_item_h4"><a href="#nipt-for-twins" title="Go here">I'm having twins. Can I have <abbr>NIPT</abbr>?</a></li>
<li class="pp-toc_item_h4"><a href="#nipt-variants" title="Go here">So I've decided to go ahead with <abbr>NIPT</abbr>, but <i>Panorama</i>, <i>NIFTY</i>, <i>MaterniT21</i>, <i>Harmony</i>... what's it all about?</a></li>
<li class="pp-toc_item_h4"><a href="#worth-asking" title="Go here">It is worth asking...</a></li>
</ul>
</details>
</div>
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<p id="article-start">So you've had a previous pregnancy with trisomy 18, and you're pregnant again and considering testing options. Or maybe your baby has clinical features of trisomy 18 on ultrasound and you're wondering if you can avoid an amniocentesis by scheduling a non-invasive test. Or you've had a non-invasive test that came back as ‘positive’ for trisomy 18 and you want to know how accurate it is.</p>
<p>Either way, here is the low-down on non-invasive testing.</p>
<a name='more'></a>
<h4 id="what-is-nipt">What is Non-Invasive Prenatal Testing?</h4>
<p><dfn>Non-Invasive Prenatal Testing</dfn> (<abbr>NIPT</abbr>) involves taking a blood sample from you, at any time from 9 to 10 weeks of pregnancy (as dated by ultrasound). The sample is sent off to a lab which analyses the <dfn>cell-free fetal DNA</dfn> in your blood. Fragments of your own DNA (<i>cell-free maternal DNA</i>) and fragments of your baby's DNA (<i>cell-free fetal DNA</i>) circulate in your blood from around the 4th to 5th weeks of pregnancy, but do not reach detectable levels until around 9-10 weeks.</p>
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<a href="https://4.bp.blogspot.com/-0EQ80EX7whI/Vyss0sNDUdI/AAAAAAAAASs/hcg8a4k_xtkXvJ-P43_tWftRLuAEj-ZDQCLcB/s1600/Blood%2Btaking.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://4.bp.blogspot.com/-0EQ80EX7whI/Vyss0sNDUdI/AAAAAAAAASs/hcg8a4k_xtkXvJ-P43_tWftRLuAEj-ZDQCLcB/s1600/Blood%2Btaking.jpg" /></a></div>
<h4 id="what-does-nipt-screen-for">What does <abbr>NIPT</abbr> screen for?</h4>
<p><abbr>NIPT</abbr> can be used to screen for an increasing number of conditions. The standard non-invasive tests offered privately in the UK (and occasionally on the <abbr title="National Health Service">NHS</abbr> as part of a research trial) screen for the three most common chromosomal disorders:</p>
<ul>
<li>Trisomy 21 (Down's syndrome)</li>
<li>Trisomy 18 (Edwards' syndrome)</li>
<li>Trisomy 13 (Patau's syndrome)</li>
</ul>
<p>Each test may also screen for other rare genetic conditions, but their detection rates for these conditions are often lower. Most non-invasive testing can tell you your baby's sex.</p>
<p><abbr>NIPT</abbr> has also been used to screen for single-gene disorders such as achondroplasia and Apert syndrome, for cystic fibrosis, and for sex-linked genetic disorders. These tests are currently only offered to families at high risk.</p>
<h4 id="postive-result-certainty">If I get a positive result on a non-invasive test, does that mean my baby definitely has trisomy 18?</h4>
<p>No. All non-invasive tests for <a href="https://en.wikipedia.org/wiki/Aneuploidy" title="Wikipedia page">aneuploidies</a> are considered to be screening tests, not diagnostic tests.</p>
<ul>
<li>A <strong>screening test</strong> shows whether your baby is at <em>high or low risk</em> of having the condition.</li>
<li>A <strong>diagnostic test</strong> tells you whether your baby <em>has or hasn't</em> got the condition.</li>
</ul>
<p>It is currently recommended that a ‘positive’ or ‘high-risk’ non-invasive test result for trisomy 21, 18 or 13 is followed up with a diagnostic test like amniocentesis or Chorionic Villus Sampling (<abbr>CVS</abbr>) to confirm the result.</p>
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<a href="https://1.bp.blogspot.com/-wIhzPMYV3kc/VystCxaxeCI/AAAAAAAAASw/HWSmt3SaswUpchPh929c6SX82rNcqmB_gCLcB/s1600/IMG_4893.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://1.bp.blogspot.com/-wIhzPMYV3kc/VystCxaxeCI/AAAAAAAAASw/HWSmt3SaswUpchPh929c6SX82rNcqmB_gCLcB/s200/IMG_4893.JPG" width="200" /></a></div>
<h4 id="why-pay-for-nipt">If it is just a screening test, why am I paying £600 for it? Why not just have the normal <abbr>NHS</abbr> screening?</h4>
<p><abbr>NIPT</abbr> tests are more accurate screening tests than any screening tests currently available on the <abbr>NHS</abbr>.</p>
<p>Most <abbr>NIPT</abbr> tests, for example, are 99.9% accurate at detecting fetuses with Down's syndrome. So for every 1000 women who are told they are at high risk of having a baby with Down's syndrome after having one of these tests, 999 will indeed have a baby with Down's syndrome. One women's follow-up diagnostic test will turn out to be negative.</p>
<p>With <strong>combined screening</strong> (the standard <abbr>NHS</abbr> offering), around 90% of fetuses with Down's syndrome will be detected, and the <i>false positive</i> rate will be less than 3%. This means that 10% of fetuses with Down's syndrome will not be identified at the combined screening, and 3 in 100 women's follow-up diagnostic tests will turn out to be negative.</p>
<p>One further reason to consider <abbr>NIPT</abbr> over combined screening is that the latter is only possible between 10 and 14 weeks of pregnancy. If for some reason you have missed this window, you will be offered the <strong>quadruple test</strong> instead, between 14 and 20 weeks of pregnancy. However, not only is the quadruple test less accurate than the combined test; it also, in many cases, only tests for trisomy 21 (though trisomy 18, as well as spina bifida, may be tested for at some hospitals or in some circumstances). <abbr>NIPT</abbr> has no cut-off date.</p>
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<h4 id="false-positives">Can a positive <abbr>NIPT</abbr> result be wrong?</h4>
<p><abbr>NIPT</abbr> is highly accurate, but it is possible to get a false positive. This usually occurs for one of the following reasons:</p>
<ul>
<li>There was a twin present, whose <abbr>DNA</abbr> remains circulating alongside the surviving baby's. It is not always possible to identify the presence of a twin who miscarried very early on using ultrasound.</li>
<li>The fetal <abbr>DNA</abbr> comes from the placenta. It is possible for the placenta to contain abnormal <abbr>DNA</abbr> even though the baby does not (this is known as <dfn>confined placental mosaicism</dfn>).</li>
<li>Maternal <abbr>DNA</abbr> is mistaken for the baby's and a maternal problem is incorrectly identified as a fetal problem.</li>
</ul>
<h4 id="false-negatives">Can a negative <abbr>NIPT</abbr> result be wrong?</h4>
<p>Yes. Detection rates, especially those for trisomy 18 and trisomy 13, vary widely between tests. If the test is done early on in pregnancy, it may be that the levels of fetal <abbr>DNA</abbr> are not yet high enough. If the mother has a raised <abbr title="Body Mass Index">BMI</abbr>, this may make the test less accurate due to higher levels of cell-free maternal <abbr>DNA</abbr>. And, as with any lab procedure, there can be errors in testing at times.</p>
<h4 id="nipt-after-t18">My first baby had trisomy 18. Will the test detect my first baby's <abbr>DNA</abbr> in my blood, and does that make it more likely that I'll get a positive result?</h4>
<p>Cell-free fetal <abbr>DNA</abbr> clears from maternal blood within 72 hours of birth, so this is very unlikely to be a problem. You can have non-invasive prenatal testing even if you had a previous baby with a trisomy.</p>
<h4 id="nipt-for-twins">I'm having twins. Can I have <abbr>NIPT</abbr>?</h4>
<p>Yes. <abbr>NIPT</abbr> for twins and multiples is possible. If your twins are identical, then it is straightforward, and may indeed be easier than with a singleton as there will be higher amounts of cell-free fetal <abbr>DNA</abbr> circulating. If your twins are non-identical, then it is possible to identify whether one twin has the condition (although not which one), and even to identify how much <abbr>DNA</abbr> there is from each twin in your blood. This is all still being looked at, and some tests are better than others for multiple pregnancies, so it is worth asking about the accuracy for twins when deciding which test to opt for.</p>
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<a href="https://1.bp.blogspot.com/-p0b5BOOVrW0/Vystb0vRgDI/AAAAAAAAAS4/E810WXsqWRkE8gELuJfCp74ahLb1TzrkQCLcB/s1600/Twins.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="https://1.bp.blogspot.com/-p0b5BOOVrW0/Vystb0vRgDI/AAAAAAAAAS4/E810WXsqWRkE8gELuJfCp74ahLb1TzrkQCLcB/s200/Twins.jpg" width="147" /></a></div>
<h4 id="nipt-variants">So I've decided to go ahead with <abbr>NIPT</abbr>, but <i>Panorama</i>, <i>NIFTY</i>, <i>MaterniT21</i>, <i>Harmony</i>... what's it all about?</h4>
<p>These are different brands of <abbr>NIPT</abbr>, and they test in different labs, cost different amounts and are more or less easily available. It is worth considering what you are testing for. Below are the main tests available in the UK.</p>
<ul>
<li><a href="http://www.ariosadx.com/">Harmony</a></li>
<li><a href="http://www.niftytest.com/">NIFTY</a></li>
<li><a href="http://genesis-serenity.com/">Genesis Serenity</a></li>
<li><a href="http://www.illumina.com/clinical/reproductive-genetic-health/clinical-labs/nipt.html">Verifi</a></li>
<li><a href="http://www.premaitha.com/">Iona</a></li>
<li><a href="https://www.sequenom.com/tests/reproductive-health/maternit21-plus/#provider-references">MaterniT21</a></li>
<li><a href="http://www.panoramatest.com/en">Panorama</a></li>
<li><a href="http://www.labs.gosh.nhs.uk/NIPT">NIPT</a><br />
(NHS North East Thames Regional Genetics Laboratory,<br />
Great Ormond Street)</li>
<li><a href="http://www.bwnft.nhs.uk/services/maternity-2/your-ante-natal-care/non-invasive-prenatal-testing-nipt">Lucina</a><br />
(NHS West Midlands Regional Genetics Laboratory,<br />
Birmingham Women's Hospital)</li>
</ul>
<h4 id="worth-asking">It is worth asking...</h4>
<ul>
<li>What are the detection rates for trisomy 21, trisomy 18 and trisomy 13?</li>
<li>What is the false positive rate for each of these? (That is, how many women who get a positive result will <em>not</em> actually have a baby with the condition?)</li>
<li>What else are you screening for, and what are the detection and false positive rates for that?</li>
<li>How do I access the test? (For the NHS laboratories, you may need an NHS referral.)</li>
<li>How much does the test cost?</li>
<li>How long will it take to receive the results?</li>
<li>How will the results be reported? (Some are reported as risk factors – eg. ‘1 in 10000’ – and some as ‘positive’ or ‘negative’.)</li>
<li>How early in pregnancy can I have the test?</li>
</ul>
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<!-- POST BODY ENDS -->Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com3tag:blogger.com,1999:blog-213041984619043061.post-19358896031096232782016-07-18T15:00:00.000+01:002017-11-14T15:59:26.778+00:00Rumer's Story, part 18<h3 class="postsubtitle">
Palliative care is not more important!
</h3>
<br />
<div class="postcontext">
Wednesday 1st to Thursday 2nd July 2015<br />
26 to 27 weeks pregnant</div>
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<br />
So on Wednesday, we were at home together for most of the day. We called the Fetal Medicine Unit (FMU) and left a message for Elysia Crouch, our link midwife there, to chase up the neonatology appointment. After the cardiology appointment the previous day, we were keen to get on with things and find out where we stood with the hospital. We knew that what we were considering – active treatment – was not the norm in the UK, and after some initial enquiries around the trisomy groups, we hadn't heard of any babies with trisomy 18 who had received it. So we were apprehensive about the appointment, and anticipated at least some initial scepticism.<br />
<a name='more'></a><br />
So in the early afternoon, we were happy to receive a phone call from Elysia Crouch. However, she hadn't received my message and was calling to ask whether we would be able to see George Donnachie earlier than planned the next morning, at 8:30am, as he had a busy day. That was fine with us, and I asked about the neonatal appointment. She said she'd give them a call and get back to us.<br />
<br />
Chris answered the phone when she called back, and she said, “Good news – I've got you an appointment with palliative care tomorrow at 12:30pm.” He was a little irritated and replied, “What about neonatology?” Elysia was slightly taken aback and responded, “But palliative care are <i>far</i>  more important.” Chris insisted that no, neonatology was essential, and we didn't want to wait any longer to see them. She agreed to call them and let us know.<br />
<br />
When Elysia called back, I answered. She had arranged for the on-call neonatal consultant to see us tomorrow. The arrangement was that she would bleep them in the morning and they would come and see us sometime between the 8:30 scan and the 12:30 appointment with palliative care. Another long day in the hospital!<br />
<br />
So on the Thursday, we got up early and caught the busy rush-hour train to the hospital – no fun when you're pregnant. We stopped off at the cupcake stand to buy a couple of vegan cupcakes for our mid-morning snack, and got one for George too as it seemed like he had a busy day ahead of him! We appreciated how he routinely went out of his way for us – arranging the MRI quickly, doing the amnio at our preferred time, seeing us immediately after the diagnosis – and especially how he conducted discussions with us, genuinely engaging with our points of view and preferences.<br />
<br />
At 8:30 the FMU waiting room was empty, even of receptionists. George saw us straight away, alone for once; he'd obviously come in early, before any of the other staff had arrived. It was an uneventful scan: Rumer was still growing along the very bottom of the chart, although her abdominal circumference was dropping off slightly. The amniotic fluid remained high, just above the normal range. We forgot to ask for <a href="http://www.babycentre.co.uk/a1014526/doppler-scans" target="_blank">dopplers</a>, which made us kick ourselves a bit later on.<br />
<br />
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<a href="https://3.bp.blogspot.com/-NhGbqlm9mLM/V4pvwyBXmzI/AAAAAAAAALg/UqHstul6wRA3ZDeLZSuM8GfAiyqgNVSeQCLcB/s1600/2015-07-02%2Bscan%2Bpicture.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="293" src="https://3.bp.blogspot.com/-NhGbqlm9mLM/V4pvwyBXmzI/AAAAAAAAALg/UqHstul6wRA3ZDeLZSuM8GfAiyqgNVSeQCLcB/s400/2015-07-02%2Bscan%2Bpicture.JPG" width="400" /></a></div>
<br />
At the end of the scan, we said to George that we needed to see Elysia to find out when and where the neonatal appointment was going to be. He said that he didn't think she was in that day, which surprised us, given that she'd said that she'd make the arrangements then. George asked one of the other FMU midwives, Ophelia Somers, to assist. None of the FMU midwives knew anything about the plan, so we agreed that we would go and get a coffee and wait for their call.<br />
<br />
We tried to find somewhere we could sit for a while, and ended up in a nearby hotel with a coffee bar, and waited. And waited, and waited. We started to worry that the neonatal appointment wouldn't happen, or that it would end up as a joint appointment. We didn't want to see them and palliative care together, but did want to see neonatology as soon as possible.<br />
<br />
Finally, at around 12pm, one of the midwives rang to say that, indeed, we would be seeing neonatology and palliative care together at 12:30, in the FMU quiet room. It was obviously too late to protest, so we made our way back to to FMU.<br />
<br />
<br />
<h6>
Scan report</h6>
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<table><tbody>
<tr>
<td><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-Rem_FJgklGM/V4qibYIOnuI/AAAAAAAAAL4/yY4PiEMeHXcLBqTnav_FqlwPPSVXmzSNgCLcB/s1600/2015-07-02%2BFMU%2Bscan%2Bp1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Scan report, page 1" border="0" height="200" src="https://4.bp.blogspot.com/-Rem_FJgklGM/V4qibYIOnuI/AAAAAAAAAL4/yY4PiEMeHXcLBqTnav_FqlwPPSVXmzSNgCLcB/s200/2015-07-02%2BFMU%2Bscan%2Bp1.png" title="* Click image for quick view
* Click caption to open document" width="130" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><b><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWcUZ3bHdYbmlhT1U/view?usp=sharing" target="_blank">Page 1</a></b></td></tr>
</tbody></table>
</td>
<td><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-KXKrtCGPUqU/V4qibTJMlkI/AAAAAAAAAL8/f-32TzQ1iM4hfHv_mdf_8mzJMJQubTDKgCLcB/s1600/2015-07-02%2BFMU%2Bscan%2Bp2.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Scan report, page 2" border="0" height="200" src="https://4.bp.blogspot.com/-KXKrtCGPUqU/V4qibTJMlkI/AAAAAAAAAL8/f-32TzQ1iM4hfHv_mdf_8mzJMJQubTDKgCLcB/s200/2015-07-02%2BFMU%2Bscan%2Bp2.png" title="* Click image for quick view
* Click caption to open document" width="136" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><b><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWTjBxSGRNTXNBckE/view?usp=sharing" target="_blank">Page 2</a></b></td></tr>
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</td>
<td><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/---t1IVuFOwE/V4qibVooqgI/AAAAAAAAAL0/EQ1Bm-h5yAIVUuhleD34du3-tm4eY_N3QCLcB/s1600/2015-07-02%2BFMU%2Bscan%2Bp3.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Scan report, page 3" border="0" height="200" src="https://1.bp.blogspot.com/---t1IVuFOwE/V4qibVooqgI/AAAAAAAAAL0/EQ1Bm-h5yAIVUuhleD34du3-tm4eY_N3QCLcB/s200/2015-07-02%2BFMU%2Bscan%2Bp3.png" title="* Click image for quick view
* Click caption to open document" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><b><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZW1ZZFRJa1VqeDg/view?usp=sharing" target="_blank">Page 3</a></b></td></tr>
</tbody></table>
</td>
</tr>
</tbody></table>
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<span style="float: left;"><b>
<a href="http://www.rumersrainbow.co.uk/2016/07/rumers-story-part-17.html">← Part 17</a>
</b></span>
<b><a href="http://www.rumersrainbow.co.uk/p/rumers-story.html">Contents</a></b> | <b><a href="http://www.rumersrainbow.co.uk/p/rumers-story-whos-who.html" target="_blank">Who's who</a></b>
<span style="float: right;"><b>
<a href="http://www.rumersrainbow.co.uk/2016/08/rumers-story-part-19.html">Part 19 →</a>
</b></span>
</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-82953799756290040032016-07-14T15:00:00.000+01:002017-11-14T16:30:49.633+00:00Rumer's Story, part 17<h3 class="postsubtitle">
Cardiology appointment
</h3>
<br />
<div class="postcontext">Tuesday 30th June to Wednesday 1st July 2015<br />
26 weeks pregnant</div>
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So on the Tuesday, we went to our second cardiology appointment. Recalling how Professor Marshall had been happy to consider surgical options even in the most dire of situations last time, we were hopeful that he would remain open to considering these and other relevant treatments. However, we also knew that offering active treatment for babies with trisomy 18 was not usual practice in the UK, and we weren't sure whether the diagnosis would change his approach.<br />
<a name='more'></a>
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It was the same junior doctor performing the scan as before (Dr Cook), and he had with him a visiting cardiologist. This was the first cardiology appointment after our trisomy 18 diagnosis and I think they weren't quite sure why we were there.<br />
<br />
The scan was very quiet, as usual: they don't talk during echo scans and actually they're fairly good at not giving away what they're thinking (however, I've never had a ‘normal’ echo, so I can't be sure). After a while, Professor Marshall joined us in the room and the three cardiologists examined the images and talked quietly among themselves. Professor Marshall pointed something on the screen out to the visiting cardiologist every now and then.<br />
<br />
After a while, we were done. We were again invited into the quiet room where June Winter (the cardiac liaison nurse) waited. This time, neither Dr Cook nor the visiting cardiologist joined us. Professor Marshall opened the conversation by describing the current presentation of Rumer's heart with his usual sketches.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-dRSDUb2McUo/V4Zf7xbIQMI/AAAAAAAAAKg/O91Z4jfPbFUPQibtbRtgaJ3jUy7Fm7TWQCKgB/s1600/2015-06-30%2BEcho%2Bsketches.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Professor Marshall's heart sketches" border="0" height="320" src="https://2.bp.blogspot.com/-dRSDUb2McUo/V4Zf7xbIQMI/AAAAAAAAAKg/O91Z4jfPbFUPQibtbRtgaJ3jUy7Fm7TWQCKgB/s320/2015-06-30%2BEcho%2Bsketches.png" title="Professor Marshall's heart sketches" width="225" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Professor Marshall's heart sketches</td></tr>
</tbody></table>
<br />
It was better news than expected! Rumer's heart remained shifted to the right, but the relative sizes of the ventricles had evened up a bit: the right ventricle now measured 8.5mm, and the left 5.8mm. This likely excluded the diagnosis of Hypoplastic Left Heart. The flow through the aortic arch was now only intermittently retrograde; blood was predominantly flowing the right way around the arch now. The possibility of a coarctation of the aorta remained, but this seemed like a minor issue compared to the complexities of the last scan.<br />
<br />
However, Professor Marshall opened the conversation by saying that they wouldn't do anything at birth. This of course was utterly unacceptable to us. By this time, we had begun dabbling in the cardiac trisomy 18 research papers and knew that babies with trisomy 18 did have cardiac surgery and that post-operative mortality was not unacceptably high, although we did not yet have a firm grasp of the research. We objected strongly, and he clarified that he meant that there would be no crisis at birth that would require immediate intervention. So no need at that stage for <a href="http://www.uichildrens.org/childrens-content.aspx?id=234424" target="_blank">Prostaglandin E</a> to keep the duct open. He explained that we could monitor Rumer closely after birth and watch as the duct started to close, to see if a genuine coarctation developed. I still wonder to this day whether his initial statement was to do with the trisomy 18, or whether it was, as he said, a slightly ambiguous way of putting the standard care plan.<br />
<br />
We asked him what they would do if there <i>was</i>  a genuine coarctation. He stated that the hospital had no policy against surgery for a baby with trisomy 18; he said that in fact this was a deliberate choice, as they wanted to provide individualised care to each child according to their clinical presentation rather than having a set rule. This felt promising but also concerning, in that we had already realised by this time that individualised care could be used as a euphemism for ‘whatever care we want to do’. Evan Marshall, however, was happy to discuss the possible surgical approaches to a coarctation of the aorta: when they would be used and their relative risks and associated mortality. We felt at this point that he was treating Rumer as he would any other baby.<br />
<br />
However, when we again clarified whether the trisomy 18 would make any difference, he said that it would be discussed in the same way that the cardiac team discussed any other case at their meetings: they would consider Rumer's clinical condition. However, he added that surgeons are not obliged to perform any surgery that they consider ‘futile’. This concerned us, since although we considered a characterisation of a particular treatment as futile as meaning that it wouldn't be successful, we realised that it would be possible to describe almost any treatment for babies with trisomy 18 as futile, given that even those without serious cardiac problems are likely to have an extremely limited lifespan. We probed a bit to try and pin him down, but he was unable to offer any further clarification on the concept of futility.<br />
<br />
We left the appointment feeling none too sure about cardiology. Would they operate (should it be necessary)? Would they refuse? Did the lack of commitment indicate that we were being fobbed off, or just uncertainty, or simply, as they indicated, an inability to discuss what they would do until Rumer's clinical condition became apparent after birth? We felt unsure, but we liked Evan Marshall – we felt that there was some support there, and at least he hadn't written off any possibility of treatment for Rumer. It felt like a good start as we hoped for a neonatal appointment quite soon. We were also pleased that Professor Marshall had been very happy to make another appointment with us a few weeks later, so as well as finding out how Rumer's heart progressed, we would have the opportunity to explore these issues further. However, we did feel that a standoff around cardiac surgery was reasonably likely to arise, and we thought to each other that perhaps we ought to find a solicitor who specialised in these matters in order to try and determine what the legal situation was.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-dP6SQbTBOtg/V4ZE3aAu7JI/AAAAAAAAAVU/gj8iFNzgdbwPu7nrzffK5G6kpbgZZMuCQCLcB/s1600/IMG_4329.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://3.bp.blogspot.com/-dP6SQbTBOtg/V4ZE3aAu7JI/AAAAAAAAAVU/gj8iFNzgdbwPu7nrzffK5G6kpbgZZMuCQCLcB/s320/IMG_4329.JPG" width="320" /></a></div>
<br />
We came back home to the delivery of Rumer's first clothes. We'd bought them in case of an early stillbirth, and they were tiny. We hoped we would never use them, and of course we never did. The next day we were waiting for the delivery of a sofa-bed (a friend had been going to come and stay but cancelled once all the issues arose) and the following day we had a fetal medicine appointment and were planning to chase that neonatal appointment. We didn't know then that this week would be the beginning of a long fight!<br />
<br />
<br />
<h6>
Echo report</h6>
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<td><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-3yv7qTD108E/V4bJTO5zZWI/AAAAAAAAAKw/eaGWB2FLDkU0DCLzHZOg1ZN-Z4YCrGXvgCLcB/s1600/2015-06-30%2BEcho%2BP1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Echo report, page 1" border="0" height="200" src="https://2.bp.blogspot.com/-3yv7qTD108E/V4bJTO5zZWI/AAAAAAAAAKw/eaGWB2FLDkU0DCLzHZOg1ZN-Z4YCrGXvgCLcB/s200/2015-06-30%2BEcho%2BP1.png" title="* Click image for quick view
* Click caption to open document" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><b><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZGRnbGllb1VJclk/view?usp=sharing" target="_blank">Page 1</a></b></td></tr>
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</td><td><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-G-P-FE3mR8c/V4bJTShWsvI/AAAAAAAAAKs/eKxcPxutNvw4WuTdgRsKs3OQ7whenzxUQCLcB/s1600/2015-06-30%2BEcho%2BP2.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Echo report, page 2" border="0" height="200" src="https://2.bp.blogspot.com/-G-P-FE3mR8c/V4bJTShWsvI/AAAAAAAAAKs/eKxcPxutNvw4WuTdgRsKs3OQ7whenzxUQCLcB/s200/2015-06-30%2BEcho%2BP2.png" title="* Click image for quick view
* Click caption to open document" width="147" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><b><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWTlFaVGg3alFLRms/view?usp=sharing" target="_blank">Page 2</a></b></td></tr>
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<span style="float: left;"><b>
<a href="http://www.rumersrainbow.co.uk/2016/04/rumers-story-part-16.html">← Part 16</a>
</b></span>
<b><a href="http://www.rumersrainbow.co.uk/p/rumers-story.html">Contents</a></b> | <b><a href="http://www.rumersrainbow.co.uk/p/rumers-story-whos-who.html" target="_blank">Who's who</a></b>
<span style="float: right;"><b>
<a href="http://www.rumersrainbow.co.uk/2016/07/rumers-story-part-18.html">Part 18 →</a>
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</div>Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-62178538970575566382016-07-08T15:00:00.000+01:002017-09-20T23:13:47.727+01:00Read beyond the headlines!<br />
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<br />
Which of these statements about trisomy 18 are backed up by research?<br />
<br />
<ul>
<li><b>Intervention improves survival to 1 year (<a href="http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37495/abstract" target="_blank">Meyer et al 2015</a>)</b></li>
<li><b>Intensive (or aggressive) intervention does not improve neonatal survival (<a href="http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37529/abstract" target="_blank">Subramaniam et al 2015</a>)</b></li>
<li><b>Infants with trisomy 13 survive longer than infants with trisomy 18 (<a href="http://bmcpregnancychildbirth.biomedcentral.com/articles/10.1186/1471-2393-13-209" target="_blank">Houlihan & O'Donaghue 2013</a>)</b></li>
</ul>
<br />
Yes, I've given links to the research that apparently backs them up. However, when you read further into these studies, you realise that their conclusions are not in fact reliable.<br />
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<ul>
<li><b>Meyer et al</b> is an invaluable study which certainly shows a high survival rate for children with trisomy 18. Higher than has ever been reported before. However, it is a dangerous leap, both for the authors and the lay person, to claim that the high reported survival rate reflects increased intensive care provided to newborns.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://4.bp.blogspot.com/-CFkKqwgZL38/V37ZQ3E48OI/AAAAAAAAAJI/fWI4MlPZF5cKttpUrQvr-4k8C9amB5otACKgB/s1600/IMG_0809.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://4.bp.blogspot.com/-CFkKqwgZL38/V37ZQ3E48OI/AAAAAAAAAJI/fWI4MlPZF5cKttpUrQvr-4k8C9amB5otACKgB/s320/IMG_0809.JPG" width="320" height="240" /></a></div>
<br />
This paper is a simple population study of survival. The authors do not have access to data showing whether the children in the study received intensive intervention or not. They don't even have a definition of ‘intensive intervention’.<br />
<br />
Not only that, they fail to differentiate between children with full trisomy 18 and partial or mosaic trisomy 18, even though the type of trisomy 18 is likely to have a significant impact on the chances of survival. If one was, for example, to assume the rates of partial and mosaic trisomy 18 were similar to that reported in <i>Wu et al 2013</i> – a similar population study of England and Wales, where palliative care is often considered to be the norm – one might note that one-year survival is only slightly higher, and one-month survival markedly lower.<br />
<br />
If the newborns in the study are receiving intensive care, why are the one-month survival rates so low? Rather than focusing on the one-year survival rates, one could focus on the low one-month survival rates and – using the same theory that children in this study, being from the US, had relatively high rates of neonatal intervention – conclude that neonatal intervention has a detrimental effect on the survival of children with trisomy 18! (I'm not saying that it does, but it shows the danger of jumping to conclusions.)<br />
<br />
</li>
<li><b>Subramaniam</b> is a study that concludes that lower levels of neonatal intervention might well increase survival, but ‘aggressive intervention does not’. I can't do better than to link to the <a href="http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37610/pdf" target="_blank">Kosho/Carey comments</a> on this. They do a better job at pointing out the flaws in this paper than I ever could.<br /><br />
</li>
<li><b>Houlihan and O'Donaghue</b> show very clearly that, in their Irish population, children with trisomy 13 had significantly longer survival than children with trisomy 18. As the opposite is true in almost every other study, I am not sure why the authors didn't question this, but reading the paper in full, it is possible to work out why in this particular group trisomy 18 survival is lower than trisomy 13 survival. Full marks if you spot it!</li>
</ul>
<br />
So what is my point? It has nothing to do with whether or not intensive interventions improve survival for infants with trisomy 18, or whether children with trisomy 18 survive longer or less long than children with trisomy 13. My point is simply that we need to be careful not to overstate what the research tells us.<br />
<br />
When we overstate, we run the risk of being discredited very easily. Now, I'll concede, there is a good chance that if you quote research at medics, they're unlikely to read beyond the abstract either, so perhaps you'll get away with it. However, if you don't, it makes things much more difficult for you. They'll see you as either unable to understand, or attempting to deliberately mislead them. Neither helps your cause.<br />
<br />
We need to be cautious about what we say, recognising that the research on many of the things we believe are beneficial is simply not there. For example, the evidence cannot be said to categorically support:<br />
<ul>
<li>that active pregnancy management reduces the stillbirth rate in trisomy 18.</li>
<li>that elective c-section improves survival to hospital discharge in trisomy 18.</li>
<li>that prenatal diagnosis reduces survival rates.</li>
<li>that intensive neonatal intervention improves survival to one year and beyond in trisomy 18.</li>
</ul>
<br />
There is <i>some</i>  evidence to support some of these things, but it is not good quality, it is not definitive, and it could all be proven wrong tomorrow. Some of these things have little to no research to support them, but one could make a logical argument for them. We need to recognise the limits of our own research before someone else does, and we need to recognise our own biases. Sometimes, when you want a paper to say what you want it to say, you need to acknowledge that maybe it doesn't.<br />
<br />
Remember always that the onus is not on you to prove beyond all doubt that the status quo is wrong; it is not necessary to prove that what you want is the best. Only that it is possible, may be beneficial and is a valid choice. The current research we have backs that up. Ask what opposing research supports the status quo.<br />
<br />
A couple of things to finish with:<br />
<ul>
<li>Joan Morris' excellent <a href="http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37525/abstract" target="_blank">analysis</a> on why we need to be cautious about saying that prenatal diagnosis harms survival chances for infants with trisomy 18.</li>
<li>And finally, what is wrong with using <a href="http://link.springer.com/article/10.1007%2FBF03194617#/page-1" target="_blank">this study</a> to show that aggressive intervention is futile?</li>
</ul>
Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-7858300705353698972016-06-27T20:00:00.000+01:002017-11-14T15:58:27.598+00:00VIDEO: Neonatal ethics conference presentation<br />
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<br />
In June 2016, we were invited to take part in a neonatal ethics conference. We talked about Rumer and about some of the difficulties we faced, focussing on the antenatal interactions with neonatology. We gave summaries of the experiences of other families affected by trisomy 18 and drew out some suggestions for doctors and other health professionals about working with families, particularly where the doctors and parents disagree about the best way forward.<br />
<br />
This is our presentation.<br />
<a name='more'></a><br />
<div class="responsive-video-4x3-lge">
<iframe allowfullscreen="" frameborder="0" src="https://www.youtube.com/embed/ql4a_KC-5sw?rel=0&showinfo=0"></iframe></div>
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<br />
<h4>
Timings</h4>
<ul>
<li><b>0:00</b> Introduction</li>
<li><b>0:44</b> Early pregnancy</li>
<li><b>2:28</b> Diagnosis</li>
<li><b>3:13</b> Learning about trisomy 18</li>
<li><b>4:07</b> First appointment with neonatology</li>
<li><b>5:36</b> Second appointment with neonatology</li>
<li><b>7:57</b> Our reaction to appointments</li>
<li><b>9:30</b> Ethics committee</li>
<li><b>12:16</b> Response to ethics committee</li>
<li><b>13:37</b> End of pregnancy</li>
<li><b>14:12</b> Birth</li>
<li><b>14:27</b> Summary of the rest of Rumer's life</li>
<li><b>15:37</b> Reflections</li>
<li><b>17:24</b> Other families' experiences</li>
<ul>
<li><b>17:37</b> Ole</li>
<li><b>18:31</b> Grace</li>
<li><b>19:31</b> Aïda</li>
<li><b>20:12</b> Isabel</li>
<li><b>21:34</b> George</li>
<li><b>23:05</b> Amelia</li>
<li><b>23:54</b> Heni</li>
</ul>
<li><b>25:00</b> Learning points for medics</li>
</ul>
<br />
<br />
<h6>
Ethics committee submission</h6>
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<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-CLR5SzM5OPo/V3kL19qnECI/AAAAAAAAAIk/yKbNXiPoaNU9G1AJMg6rRXUhWplvw1QzwCLcB/s1600/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Ethics committee submission, page 1" border="0" height="150" src="https://3.bp.blogspot.com/-CLR5SzM5OPo/V3kL19qnECI/AAAAAAAAAIk/yKbNXiPoaNU9G1AJMg6rRXUhWplvw1QzwCLcB/s200/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p1.png" title="* Click image for quick view * Click caption to open document" width="106" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><B><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZTY1ek4xeWI3ejg/view?usp=sharing" target="_blank">Page 1</a></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-xwRWM6TjGig/V3kL1zajryI/AAAAAAAAAIg/3HZQZEh9FagojNPZtusdh8AoAg-OWHRpgCLcB/s1600/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p2.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Ethics committee submission, page 2" border="0" height="150" src="https://4.bp.blogspot.com/-xwRWM6TjGig/V3kL1zajryI/AAAAAAAAAIg/3HZQZEh9FagojNPZtusdh8AoAg-OWHRpgCLcB/s200/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p2.png" title="* Click image for quick view * Click caption to open document" width="106" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><B><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZTY1ek4xeWI3ejg/view?usp=sharing" target="_blank">Page 2</a></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-cwGwxi-aPwc/V3kL18jgYvI/AAAAAAAAAIc/8L3Ni7L7lnk-a9ERXp0EUwzFjjpHySo5ACLcB/s1600/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p3.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Ethics committee submission, page 3" border="0" height="150" src="https://2.bp.blogspot.com/-cwGwxi-aPwc/V3kL18jgYvI/AAAAAAAAAIc/8L3Ni7L7lnk-a9ERXp0EUwzFjjpHySo5ACLcB/s200/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p3.png" title="* Click image for quick view * Click caption to open document" width="106" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><B><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZTY1ek4xeWI3ejg/view?usp=sharing" target="_blank">Page 3</a></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-AvXxO_1TtZY/V3kL2Vu5NqI/AAAAAAAAAIo/Caexbs6i7Ew9MKvKE3ydsSYXVkV3sAWNQCLcB/s1600/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p4.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Ethics committee submission, page 4" border="0" height="150" src="https://4.bp.blogspot.com/-AvXxO_1TtZY/V3kL2Vu5NqI/AAAAAAAAAIo/Caexbs6i7Ew9MKvKE3ydsSYXVkV3sAWNQCLcB/s200/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p4.png" title="* Click image for quick view * Click caption to open document" width="106" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><B><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZTY1ek4xeWI3ejg/view?usp=sharing" target="_blank">Page 4</a></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-8gXMnDicI_Y/V3kL2Y44VHI/AAAAAAAAAIs/w0KQhpJce4cL0QtFTs1Y9TooDEfjnTuJQCLcB/s1600/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p5.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Ethics committee submission, page 5" border="0" height="150" src="https://1.bp.blogspot.com/-8gXMnDicI_Y/V3kL2Y44VHI/AAAAAAAAAIs/w0KQhpJce4cL0QtFTs1Y9TooDEfjnTuJQCLcB/s200/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p5.png" title="* Click image for quick view * Click caption to open document" width="106" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><B><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZTY1ek4xeWI3ejg/view?usp=sharing" target="_blank">Page 5</a></b></td></tr>
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<td>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-ujYSgWrbOIk/V3kL2udjuNI/AAAAAAAAAIw/KlrtLsGSOO4n02BiUl29OvhAZ-T9OzT5wCLcB/s1600/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p6.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Ethics committee submission, page 6" border="0" height="150" src="https://4.bp.blogspot.com/-ujYSgWrbOIk/V3kL2udjuNI/AAAAAAAAAIw/KlrtLsGSOO4n02BiUl29OvhAZ-T9OzT5wCLcB/s200/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p6.png" title="* Click image for quick view * Click caption to open document" width="106" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><B><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZTY1ek4xeWI3ejg/view?usp=sharing" target="_blank">Page 6</a></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-3L-CSOFkDX0/V3kL23JURRI/AAAAAAAAAI0/nhVrCDj6s5ETXUWaQmN_7_PvdCjXUWr_QCLcB/s1600/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p7.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="Ethics committee submission, page 7" border="0" height="150" src="https://1.bp.blogspot.com/-3L-CSOFkDX0/V3kL23JURRI/AAAAAAAAAI0/nhVrCDj6s5ETXUWaQmN_7_PvdCjXUWr_QCLcB/s200/2015-07-28%2BEthics%2Bcommittee%2Bsubmission%2Bfor%2Bblog_p7.png" title="* Click image for quick view * Click caption to open document" width="106" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><B><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZTY1ek4xeWI3ejg/view?usp=sharing" target="_blank">Page 7</a></b></td></tr>
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</tbody></table>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-58497433709590311702016-06-10T15:00:00.000+01:002017-11-14T15:58:09.661+00:00On winning<h3 class="postsubtitle">
Even if you do 'win', there are a lot of losses
</h3>
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I wrote this for another website. As far as I know, they haven't yet put it up, but it does reflect our feelings on our experiences and I wanted to share.</div>
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<i>“While we do not all agree that this is the right course of action, as a consultant body on the neonatal unit, we have decided we can offer Rumer resuscitation as we would any other child.”</i><br />
<a name='more'></a>
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<tr><td class="tr-caption" style="text-align: center;">Victory! But not the end...</td></tr>
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Winning! It should feel good. That is how you imagine it
when you are caught up in what you and your ‘opponents’ see as a battle. It is
you against them, and in this case the battle was over something more important
than anything I’d ever fought for before: my daughter’s life.<br />
<br />
My unborn daughter Rumer was diagnosed with a chromosomal
condition called trisomy 18 when I was
23 weeks pregnant. Most babies with trisomy 18 are not born alive; of those who
are, only a handful see their first birthday. Because of this high mortality
rate, in the UK, full resuscitation and other treatments such as cardiac
surgery, ventilation etc. are not offered to these children. They are left to
die. Emerging evidence, however, suggests that treatment does improve the chances
of survival. We knew we wanted full treatment for Rumer, and we walked into our
first appointment with the neonatal team prepared for some opposition.<br />
<br />
And we got it, in spades. All the arguments we had
anticipated and more came out. Quality of life, pain and suffering, the child’s
best interests, futility. It was a full-on assault and we reacted, we played the
game. The slightly threatening but still polite emails to people with influence;
the seven-page submission for the ethics committee with lists of research; the
legal advice sought but never mentioned; the second opinion from just the right
person. And yes, we won: in that appointment with a new neonatologist, they said
yes, and that should have been that.<br />
<br />
Except of course it wasn’t. When you've been in a war and
it ends, you don’t all shake hands and become best friends. Trust, if it was
there in the first place, is lost. Peace is a fragile thing and both sides know
it. We had won, but still as mere parents in a system which we can never fully
understand, we were at a disadvantage: the power was not with us; this was a
case of David overcoming Goliath. But if you’re David, you start wondering if
Goliath has really surrendered or if this is just a ploy; if you don’t trust
them then perhaps they are lying to you, perhaps this is a trick, a trap. You
try and pin them down, push for written agreements, record appointments, insist
on a letter from someone higher up, and maybe you get it.<br />
<br />
On the other side, the losers of this war are already
resentful that you won. There are internal squabbles that they don’t want you to see,
between those who agreed to the surrender and those who thought they should
fight on. And you, the victors – the
reminder of their loss – don’t just go away. They have to continue dealing with
you; they have no choice. Not only that, but you are demanding more: all those
agreements, letters; it must feel to them like you are rubbing their noses in
their loss. You aren’t even grateful that they gave you what you wanted.<br />
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<tr><td class="tr-caption" style="text-align: center;">Happy Birthday! </td></tr>
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<br />
So with that history I gave birth to our daughter. A baby
who nobody expected to survive all that long. But she did. Six weeks we spent
in neonatal unit, and all that history between us and the neonatal team played
out exactly as you would expect. Lack of trust leads to controlling, second-guessing,
anxious parents. Resentments lead to a medical team that doesn’t want to give
‘special treatment’ and that wants to pretend the history doesn’t exist. Problems
spiral. We end up in meetings over minutiae, over reading the notes; we can’t
believe they want to make such a fuss about this; they can’t believe we can’t
just trust them. We are at loggerheads.<br />
<br />
Mediation gets involved and things get smoothed out for now,
but resentments linger. We can’t wait to get out of there. Before we do, we get
agreements from the rest of the hospital to treat according to clinical
condition. Soon after that we leave; we don’t get the feeling of the staff are
sorry to see us go.<br />
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<tr><td class="tr-caption" style="text-align: center;">Back again</td></tr>
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Soon after that, sadly, we are back. We spend two weeks in
general paediatrics, get home again but are back in four hours, and then another
week in paediatrics, four weeks in intensive care and sadly Rumer dies on New
Year’s Day 2016. The paediatric team never really questions treating Rumer, but
old histories linger. These are our opponents’ allies: we question their
motives and actions and they get tired of it; old patterns reassert themselves;
even as we recognise it we have no energy to change it and neither, it seems,
do they. Everywhere we go, it goes on. The ‘difficult parents’ and the ‘arrogant
doctors’, same old story.<br />
<br />
Winning, it turns out, is not all that great. It solves some
problems but leads to others. Our memories of Rumer’s life are coloured by the
aftermath of war. There shouldn’t have been a war. Our experiences serve to
illustrate how an adversarial approach to communication leads to problems that
don’t end when someone wins. There are going to be disagreements in healthcare,
between patients and their advocates and health professionals. If when we had
first disagreed, instead of opposition, there had been open discussion and
listening, perhaps we could have reached consensus. Perhaps we could have all
been on the same team, striving for the same goal.<br />
<br />
In the end the actual goal – in our case, the best interests
of Rumer – got lost in the fight between us and the health professionals. We
fought a fight of treatment or no treatment and forgot that in the end we
wanted the same thing: what was best for Rumer. Perhaps if we’d sat down and
talked about that and not got sidetracked, we’d have realised that we were in fact
in agreement on the principles and differed only in how we thought they should
be implemented. Perhaps with open communication and discussion, exploration of
the reasons behind our differing opinions, we’d have reached agreement. At
least, hopefully, we’d have had more respect for each other, more mutual trust,
fewer resentments.<br />
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<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<br />
Both sides have responsibility in a war and I acknowledge
ours. We fought the battle because we felt we had no choice. To not fight it
was unthinkable: we couldn’t let Rumer die for lack of treatment, and I still
feel the payout; those precious three months were worth the cost. But it was a high
price. I am sure the health professionals too paid a price. In the end nobody
won.
Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com2tag:blogger.com,1999:blog-213041984619043061.post-72613449190975954242016-05-30T15:00:00.000+01:002017-11-14T15:57:52.328+00:00The responsibilities of parents<br />
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Quite often when we asked for things like access to Rumer's notes, or to be involved in medical decisions, we were told, in order to explain why they had policies against these things, that:<br />
<br />
<ul>
<li>"No other parents have ever requested this."</li>
<li>"You are exceptional parents. Other parents wouldn't understand the notes."</li>
<li>"Not all parents want to be involved in medical decisions; some parents want us to make the decisions."</li>
</ul>
<a name='more'></a><br />
Even with the best doctors, the ones who truly value parental involvement, we had discussions in which they told us that, for some parents, they had to make the decisions. For example, a very good neonatologist described to us how he had met parents who 'couldn't' make the decision to withdraw treatment from their child, and they needed him as a doctor to tell them that they had no choice and to initiate the withdrawal of treatment. I am not accusing him of lying: I have myself heard parents, who would decline blood products for their children for religious reasons, explain their actions on the basis that their child won't die because the doctors will give them blood anyway. Clearly there are parents who prefer doctors to make decisions for them.<br />
<br />
I recently read a <a href="https://neonatalresearch.org/2016/05/10/the-multidisciplinary-conference-a-parental-view/" target="_blank">blog post</a> by an extremely family-focused Canadian neonatologist, who agreed with us that parents should be involved in multidisciplinary meetings, before clarifying: "if they want to be". My question is: should parents be able to say, "No, I don't want to be involved," or "No, you make the decision," or indicate by their actions or inaction that they want the medical team to lead on the child's care?<br />
<br />
I don't think so. I think that when you become a parent, you take on responsibilities, and one of those responsibilities is to make decisions on behalf of your child. If your child is healthy, you make decisions on feeding methods, sleep, vaccinations and a whole host of other things, and generally most people would be surprised if you refused to make a decision on these topics and looked to someone else to decide for you. If your child is sick, then it is the same. The responsibility for decision-making lies with you - at least, until the child is old enough to take on some of the responsibility themselves. With healthy and sick children you may turn to outside agencies for advice and information, but in the end, the choice has to be yours.<br />
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<br />I'm not saying it's easy to make decisions: it isn't. Especially when those decisions require an understanding of complex medical information, or will shorten or end the life of your child. I am not saying that all parents find it equally easy to comprehend complicated information; however, the responsibility of the medical team is to communicate that information to parents in a way they can understand and to clarify their understanding so they have the basis for decision-making. That isn't easy either, but it is the job of a doctor. If parents are struggling despite their best efforts, they can appoint a medical advocate to help communicate. If doctors have ethical objections to the decisions the parents are making, they can resolve using the procedures laid down in their professional guidance. (Other than in extreme emergencies in which there is no time to communicate, this never involves simply imposing their own decision.)<br />
<br />
I realise that many people, especially medical professionals, will now be saying, "But not all parents want to..." - and that is my argument: it doesn't matter whether they want to; parents should and must shoulder their responsibilities, and they should not be sheltered from them, out of paternalism or kindness or anything else. From the best of intentions - in order to avoid upsetting parents; to sidestep difficult, frank discussions; to be kind; to respect parents' wishes - professionals frequently permit parents to turn a blind eye to their responsibilities.<br />
<br />
This has some advantages for professionals. It takes time to explain medical information to parents, and it is often frustrating to explain complex concepts to lay people. How much easier to have the discussion with your fellow professionals, or just make the decision that <i>you</i> think is best? Most of us like it when people make the 'right' decisions, and parents may not always do so. If you just make the decision yourself, then the 'right' decision is made: that's pretty satisfying. Decision-making with other professionals avoids emotion too, which some appreciate: decision-making with parents can be a messy, upsetting business.<br />
<br />
However, it also has some significant disadvantages, which are often not mentioned. Professionals who make decisions which rightfully belong to the parents (ie. all non-emergency decisions) put themselves straight in the line of fire when things go wrong. When you take the responsibility of making the decision, you get the responsibility of the outcome. This can have significant repercussions if things turn out badly, or in a way the parents come to reject. Those parents who you didn't want to upset end up blaming you. They took no responsibility for the decision, and they hold you accountable for the outcome.<br />
<br />
<br />
<h4>
So what if...</h4>
<ul>
<li>parents can't or won't make a decision?</li>
<li>parents are unable to comprehend the information needed to make a decision?</li>
<li>parents make a decision which you the doctor(s) consider not to be in the child's best interests?</li>
<li>it's an emergency?</li>
</ul>
<br />
These things are really not issues: we already have clear guidance in place for dealing with them. Because, interestingly, legally, the decisions <i>do</i> lie with parents: not just parents who want to make decisions but <i>all</i> parents.<br />
<br />
So if parents can't or won't make a decision, and despite your support and work with them, they still won't, this does not mean that the medical professional now takes over. The decision, if parents cannot or will not make it, lies firmly with a judge. I would suggest that if parents were empowered and supported, these situations would be rare.<br />
<br />
In the case of parents being unable to comprehend the information even though you have employed every means available to enable them to do so: again, the decision lies with a judge. When we want a neutral opinion about a child's best interests, we should be asking a court, not a doctor. If the issue with comprehension is likely to be ongoing, the court can appoint someone to make medical decisions (and other decisions, if appropriate) for the child.<br />
<br />
If parents make a decision that you consider not to be in the child's best interests and you have escalated appropriately according to guidelines (you know the drill! Work toward consensus, mediation, ethics, etc...) then I guess you are off to court again.<br />
<br />
And emergencies? Well, then, and only then, is it the responsibility of the physician to act in accordance with what they perceive to be in the child's best interests, regardless of parental views. However, where an emergency is foreseeable in advance as being reasonably likely, parental views on how to handle it should be sought and agreement reached, in line with any other medical situation. And even during the emergency, communication with parents and parental decision-making should be adhered to wherever possible. Rare is the emergency in which there is truly no room for any parental decision-making whatsoever.Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-1579291423630084152016-05-22T15:53:00.001+01:002017-11-14T15:57:27.436+00:00Palliative care vs active treatment<h3 class="postsubtitle">Stereotypes and Realities</h3>
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Fundamentally, when you have a baby with T18, you are told you have two options to choose from* (of course, you may not in fact be offered one of these choices):<br />
<ul>
<li>Palliative care (also referred to as 'comfort care')</li>
<li>Active treatment (also referred to as 'full treatment')</li>
</ul>
<br />
However, what you are told, or understand, about these choices is likely to be very different from the realities.<br/>
<a name='more'></a>
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In one narrative, palliative care is a bed of roses: your child will be born into love, held and cuddled, spared all suffering, will die in your arms without ever knowing the horror of the world; you are making the supreme sacrifice to spare your baby pain. Active treatment, meanwhile, involves tremendous pain and suffering for the baby: they will have tubes down their nose, in their veins, in their throat; they will be separated from their parents, barely able to be touched or cuddled, and for what gain? They are going to die anyway.<br />
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In the other narrative, palliative care is neglecting your child, allowing them to die, while the people who could save them look on and fail to act: it is an act of discrimination on the grounds of chromosomal make-up. While active treatment, meanwhile, involves them getting the medical care they need, being treated fairly, given a chance and being far more likely to survive.<br />
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The realities don't really add up to these mythologies for either approach. (I will admit to having a strong bias for active treatment which may shine through here.)<br />
<br />
First of all, palliative care is not a bed of roses. Your child will undoubtedly, without question, suffer, as do all of us who ever know life. Dying of respiratory distress may look peaceful, but it isn't: it is frightening for anyone to be unable to oxygenate. Drugs will relieve that distress somewhat if given. We can minimise suffering, not eliminate it. It may not be pleasant to watch your child die. There is a good chance that, at times, you may want to change your mind and beg them to save your baby. On the other hand, good palliative care is not neglect either: if limits are set carefully and it is well managed, suffering is minimised and the passing can be peaceful.<br />
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Active treatment is not hell on earth. Here, too, your child will undoubtedly, without question, suffer. It is not pleasant to be intubated, to have a drip in your vein or a tube down your nose. On the other hand, drugs can indeed minimise this suffering, and with luck, it will be temporary, and your child will recover and no longer need this high level of medical intervention. Also, your child does have a considerably higher chance of survival, and some suffering may be the pay-off for that. It may also be better in your view than the suffering of palliative care. Your child will have love and cuddles and baths and stories and a life in hospital also. <br />
<br />
There isn't an option for 'no suffering' after a diagnosis of T18. There are simply two choices, both of which lead to different sufferings: one extends survival and hence extends suffering, but also extends joy, and the other limits survival, so shortens suffering, but also shortens joy.<br />
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Make your choice, but make it in the knowledge of realities, not myths.<br />
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*<span style="font-size: small;"><i> Of course, in reality, most of us end up somewhere on the broad spectrum between 'do nothing' and 'do everything', but you'll likely tend more towards one end or the other.</i></span>Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com3tag:blogger.com,1999:blog-213041984619043061.post-3560908500377787702016-05-13T15:00:00.000+01:002017-09-20T23:12:29.060+01:00Why I don't hate trisomy 18<br />
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A lot of people proclaim to hate trisomy 18. I understand why; they feel it took their babies from them. They see it as an enemy that stole their longed-for child and left them with pain and grief. I get that.<br />
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It's just not the way I feel.<br />
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Rumer without trisomy 18 was not a possibility. Without trisomy 18, Rumer would not have existed. I suppose I would never have known; I'd have another baby in my arms right now; I suppose I would have loved them just as much. I would have lived in the world most people get to live in, the world without hospitals and crises and fights with doctors and death, and I'd have thought an admission to PICU was a catastrophe - in fact, I guess I'd have thought a trip to A&E was a catastrophe. The world I live in now wouldn't have touched me, but that just makes me sad.<br />
<br />
Trisomy gave me a gift. First of all, it gave me Rumer: it gave me my perfect, beautiful girl, with her little crossed-over fingers and 'hobbit feet' and her sweet smiles, soft skin and love of cuddles, music and people talking to her. Rumer without trisomy 18 would not have been Rumer. And with Rumer, trisomy gave me something else. It gave me a community of people: people who are by turns supportive, wonderful, inspiring, irritating and courageous. I would be sad not to know them.<br />
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<br />
Trisomy gave me insight. Insight into myself, into who I was, into Chris, into hospital systems, into doctors and nurses, into how communication works and how it doesn't. Insight into a different world where babies live and die, where PICU is just some place you end up eventually and hopefully leave. Trisomy gave me the courage to fight, to speak up for Rumer, to change things. And it gave me strength, so much strength. It gave me anger: fiery anger, anger at systems and doctors that let children die and lie to their parents, and that anger also gave me power: power to turn things around.<br />
<br />
Trisomy also gave me the mundane. It made me realise that even in the middle of the greatest crisis, even when you are spending the last hours and minutes of your child's life with them, the mundane intrudes: the need to eat, to use the loo. It made me realise that what can help parents in hospital is simply someone to bring food and do the laundry. It introduced me to people who are wonderful, insightful and caring: those people were medical professionals, volunteers and bagel-sellers. It also introduced me to people who were narrow minded and lacked compassion, and those people also spanned the range, medical professionals making up quite a number of them. Perhaps that was the downside of trisomy.<br />
<br />
So overall I'd like to thank trisomy 18: thank you for all the gifts you gave me. I'll take the other stuff for the gifts, and if you should want to touch my life again, then know that while you may not be welcomed with open arms, I'll know that in the end you will bring more than you take.Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com2tag:blogger.com,1999:blog-213041984619043061.post-26572823245547249752016-05-09T21:00:00.000+01:002017-09-20T23:11:58.128+01:00To a hospital somewhere in the UK<br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>I wrote this letter when Rumer was 10 weeks old and in PICU, after an online friend shared her letter from a major UK hospital denying treatment for her unborn son with trisomy 18. I didn't plan to send it. The child was eventually given full treatment by another UK hospital. Names have been changed to protect the innocent (and not so innocent).</i></span><br />
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<b>Dear Major Hospital in the UK,</b><br />
<br />
You say in your letter to the Jones family that it is in the best interests of their son Ben to offer nothing but palliative care if he is born alive. You believe it is in his best interests to die. To die not because of his underlying condition (which he may well do, even with the best you could offer) but to die because you refuse to treat him, refuse to use the skills and equipment you possess to attempt to preserve his life. May I ask why?<br />
<br />
I confess I am puzzled, because 10 weeks ago, a hospital very like yourselves - a major UK hospital with a children's hospital attached - resuscitated and ventilated my daughter who, like Ben, was antenatally diagnosed with trisomy 18. They, like you, queried whether it was in 'the child's best interests', whether it was ethical. But unlike you, after considering the evidence, they decided that it was. I cannot see how it would have better served my child's interests to have died at birth, to be buried now in our garden - in the grave we had prepared - than to have spent 10 weeks and counting being loved by her family, enjoying life.<br />
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<tr><td class="tr-caption" style="text-align: center;">Better dead than intubated. Really?</td></tr>
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I wonder why you consider it not in Ben's best interests to have a chance to be alive. If you worry that his quality of life will be impaired by his trisomy 18, both I and many other parents of babies, children and adults (yes adults) with trisomy 18 are happy to reassure you on this point. As you know, research also reports an excellent quality of life for people with trisomy 18.<br />
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Perhaps you worry that the burdens of intensive care would be too much for Ben. That the undoubted pain and suffering intrinsic to neonatal intensive care would not be 'worth it'. That he would suffer for minimal benefit, to live a shortened life with significant neurodevelopmental disability, if he survives to leave the NICU at all.<br />
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Don't worry! More babies with trisomy 18 leave the NICU and go home than babies born at 23 weeks gestation, and they have a shorter length of stay. This is true even in hospitals where full treatment is denied once the diagnosis is confirmed. Of course, if appropriate treatment is offered, even more survive to go home.<br />
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<tr><td class="tr-caption" style="text-align: center;">See: we do leave!</td></tr>
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As for 'shortened life': well, of course Ben's life is likely to be shorter than average. The oldest person with full trisomy 18 was 39 years old <span style="color: #999999; font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; font-size: 15px;"><i>[please note that this is an error: there is a report of a 50-year-old, but I was unaware of this at the time]</i></span> as opposed to the 70 or 80 years that most of us can look forward to. But there is value in a short life; there is joy. Morally and legally, the obligation to prolong life even when it is likely to be short is well-established.<br />
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I don't think we'll even discuss the neurodisability angle. We were supposed to have moved on from 'better to die than live with intellectual disability' several decades ago.<br />
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Maybe you have other worries, ones you can't admit to, about finances, about limits on care. Where does it stop? Maybe you worry about being seen as 'mavericks', about scrutiny and criticism from colleagues, especially if there is not a good outcome. You know these are not acceptable reasons to deny care, but they're there. Let them go! Ben's life is not worth less money than another child's. There are limits on care for <i>every</i> child, and they can be discussed. And 'mavericks', or pioneers? Others have already done this. Lead the way with them or follow behind!<br />
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Because, Major Unnamed Hospital, times are changing. Parents will no longer believe you when you say nothing that can be done. To paraphrase an <a href="https://neonatalresearch.org/2012/07/23/our-children-are-not-a-diagnosis-the-family-experience-of-trisomy-13-and-18/" target="_blank">eminent neonatologist</a>, they only have to look online to find out that you're lying! Because something can be done, and <i>is</i>&nbsp being done. In Japan, in the US, in the UK, children with trisomy 18 are living longer and longer. Living longer because they are treated: treated as valuable, human and worthy. No longer do babies die a terrible death (and respiratory distress is a terrible death) while doctors deny them the breathing support which could alleviate their distress. There are even places where such 'palliative' care is considered unethical, where if you choose that for your baby you must go elsewhere.<br />
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I hope you will reconsider, but if you do not, I hope you will at least acknowledge that your decision is not based upon a genuine regard for Ben's best interests, that your decision is your own, made for your own reasons. That the evidence and the lived experiences of individuals with trisomy 18 and their families do not support you.<br />
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<tr><td class="tr-caption" style="text-align: center;">Short, happy lives!</td></tr>
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Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com4tag:blogger.com,1999:blog-213041984619043061.post-39289393667839724692016-05-06T15:00:00.000+01:002017-11-14T15:56:50.917+00:00Full, partial or mosaic?<br />
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Trisomy 18. What is it? Most people can grasp pretty quickly that it means that you have three copies of chromosome 18.<br />
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Most of us have 22 pairs of chromosomes, each pair numbered 1-22, and a pair of sex chromosomes (XX for a girl, XY for a boy). Babies with a trisomy have three of one of these chromosomes instead of the pair. Babies with trisomy 18 therefore have three copies of chromosome 18.<br />
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See <a href="http://bio3400.nicerweb.com/Locked/media/ch08/trisomy-18.html" target="_blank">this image</a> for a picture of the chromosomes of a boy with T18.<br />
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<h5>
Full Trisomy 18 (FT18)</h5>
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Most babies with trisomy 18 have the 'full' variant. This means that they have an entire extra copy of chromosome 18 in every cell in their body. It is caused by an error in cell division at the time of conception.<br />
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<h5>
Mosaic Trisomy 18 (MT18)</h5>
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Some babies have mosaic trisomy 18. This means that they have an extra copy of chromosome 18 in only some of their body's cells; the remaining cells have the normal pair. This is caused by a error in cell division at a later point than conception.<br />
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The effect that mosaic T18 has on a child depends on how many cells are affected. In occasional cases it is an incidental finding in an otherwise healthy adult. Research shows that most children with MT18 do have learning difficulties on the mild-to-moderate spectrum, although some do have IQs in the average range. Children with MT18 may have a range of physical disabilities. It is unclear whether children with MT18 have a restricted life expectancy. It seems likely that it depends on the extent of their physical disabilities.<br />
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<h5>
Partial Trisomy 18 (PT18)</h5>
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Partial T18 is rarer than both full and mosaic trisomy 18, and is harder to understand.<br />
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Chromosomes have a short and a long arm. The short arm is labelled <i><b>p</b></i>; the long arm is labelled <i><b>q</b></i>.<br />
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People with partial trisomy 18 have a duplication of one part of the chromosome, so either <i>p</i> or <i>q</i>. Sometimes they may have a duplication of part of the long arm <i>and</i>&nbsp part of the short arm.<br />
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People with a duplication of the short arm of the chromosome (<b>trisomy 18p</b>) have less severe medical problems as a group than people with a duplication of the long arm of the chromosome (<b>trisomy 18q</b>).<br />
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It is also possible to have a duplication of only <i>part</i>&nbsp of the short or long arm of chromosome 18. For example, if you had a duplication of part of the short arm, you would be described as having <b>partial trisomy 18p</b>. Your difficulties may be fewer than someone with full trisomy 18p. However, both of you in the spectrum of trisomy 18 would be described as having partial trisomy 18.<br />
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Make sense? No? See <a href="http://www.chromosome18.org/other-conditions/" target="_blank">here</a> for a clearer explanation from people more knowledgeable than me.<br />
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The most important thing about partial trisomy 18 is that it can be passed from parent to child. Say a father has a <b>balanced translocation</b>. Part of his chromosome 18 has attached itself to another chromosome (let us say chromosome 4), but helpfully, in exchange, that chromosome (4) has attached part of itself to chromosome 18, so all is good, fair and balanced. The father doesn't have any problems: all his genetic material is present.<br />
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However, when he goes onto have a baby, his chromosome 4 (with its extra bit of chromosome 18 attached) is passed on to his child, but (as it happens) he passes on his 'normal' chromosome 18 and not the one with the extra bit of chromosome 4 attached. So now the child has two full chromosome 18s, and an extra bit of chromosome 18 attached to chromosome 4. The child is said to have an <b>unbalanced translocation</b>, which constitutes a form of partial T18. <br />
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Balanced and unbalanced translocations can happen randomly, so your child may be the first to have one. Your child can have partial trisomy 18 without it being inherited, but if your child has partial T18, both parents should be offered testing to see whether either of them do have a balanced translocation and to discuss the risks of PT18 to any future children.<br />
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<h4>
So how do you know which kind of T18 your child has?</h4>
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On CVS, amnio or post-birth blood results, it should be clear that your child has either:<br />
<ul>
<li>A partial copy of chromosome 18. You will then be offered genetic testing. Your child has partial trisomy 18.</li>
<li>Three copies of chromosome 18 in some of the cells that were tested but not others. Your child has confirmed mosaic trisomy 18.</li>
<li>Three copies of chromosome 18 in every cell tested. Your child has either full trisomy 18 (most likely) or mosaic trisomy 18.</li>
</ul>
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It is impossible to exclude mosaicism by antenatal testing, as insufficient cells are tested. After birth, a full test can be performed and then you can say that it is highly likely that your child has full T18. However, as you cannot possibly test every cell in the body, you cannot absolutely rule out mosaicism in any child.Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-80717311990425605642016-05-03T15:00:00.000+01:002017-09-20T23:11:36.750+01:00What do you call your doctors? Jane or Dr Smith?<br />
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This article from the BMJ was retweeted by a couple of our neonatal consultants: <a href="http://careers.bmj.com/careers/advice/Are_you_%E2%80%9CJane%E2%80%9D_or_%E2%80%9CDr_Smith%E2%80%9D%3F_Does_formality_between_trainers_and_trainees_affect_training_and_clinical_practice%3F" target="_blank"><b>Is it Jane or Dr Smith?</b></a><br />
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While I admit to having limited interest in how junior doctors address their consultants (although I was always quite surprised when they referred to them as 'Dr X'), I am more interested in the confident statement that:<br />
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<i>Evidence indicates that patients want to call their doctor by their professional title. This has obvious benefits in terms of keeping a professional distance and engendering both trust and confidence.</i></blockquote>
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Sadly, I couldn't find the original article cited in support of this statement, but it certainly piqued my interest.<br />
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I can say quite confidently that I personally have no desire to address the medical team by their professional titles. In fact if you are my doctor and you want to be called by your professional title, you'd better address me as 'Ms Roper'. (I note that this doesn't happen.) In general, we fell very quickly into addressing the medical team as Laura, Sam and Tom, not Dr Smith, Dr Jones and Dr Bloggs. And whether we felt trust and confidence in Laura, Sam and Tom depended on whether they were a) honest, b) trustworthy and c) competent, not on what we called them. The better doctors in terms of being honest, trustworthy and competent, in general, seemed to refer to themselves by their first names. I wonder if the need to maintain 'professional distance' is heightened for those doctors who lack confidence in themselves, who are proclaiming by their use of their title: "Trust me, I'm a doctor!" Junior doctors in particular were very prone to introducing themselves by their title, which might back this theory up.<br />
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Also, by using titles for themselves but not for patients (or parents of patients), doctors seem to be maintaining not so much professional distance as <i>hierarchy</i>. Hierarchy is perhaps even more heightened by the persistent use of the 'titles' <i>mum</i>&nbsp and <i>dad</i>&nbsp for parents in the NICU. Not only are parents refused the dignity of being addressed by their title while their doctors wish to be addressed in this way; they are even denied the courtesy of using their first names, often being addressed only by the dehumanising 'mum' or 'dad'. They have become generic people of no importance in the system. They are no longer humans with names but people in the role the NICU place them in.<br />
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We got quite used to calling doctors by their first names, and only used their surnames when deliberately resorting to excessive formality in order to make a point. I felt this broke down barriers and often placed us in a stronger position. Negotiating with equals is a stronger position to be in than being dictated to by superiors. One very senior doctor (the medical director of PICU, if you want to know quite how senior) once told us: "We decide what to do and then we tell you." This is clearly the medical expectation of how the care of babies in hospital should be managed, but parents need to challenge this and insist on their rightful place as part of the team around the child, and one way to do that is to act in every way as equals. For parents in the position of having their child discriminated against in terms of medical care (ie. most parents of children with trisomy 18) this is even more important.<br />
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So what do you call this doctor? Might I suggest starting with 'Jane', not 'Dr Smith'.<br />
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Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-63805804087738162032016-04-24T15:00:00.000+01:002017-09-20T23:11:27.083+01:00How did it feel to be the parent of a baby with trisomy 18 on the neonatal unit?<br />
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I've been searching for an analogy for this for a while, you know the type: imagine you're abseiling off a tower and half of the instructors think it would be in your best interests to fall to your death, but you don't know which half; or, you have to negotiate an obstacle course in order to save your child's life, and along the way you'll meet people, some of whom will tell you the truth, some of whom will lie, and some will prevaricate, and you have to work out who is on your side in order to win.<br />
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However, I've decided there is no analogy that really fits this experience, so I've decided to tell it how it was. This of course is how it was for us. Not how it is for people in wonderfully supportive neonatal units who not only agree to treat your baby, but actually <i>want</i> to; and probably not how it is for people with a postnatal diagnosis. Hopefully those people will chime in with their experiences.<br />
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Why now? Why tell it now? Partly because I have friends about to go through this experience, and like us, I doubt whether they know what they're getting into, although I imagine their experience will be unique. And partly because I want the medical team, one of whom recently admitted to us that there had been an irretrievable breakdown in relationships, to understand how it felt to be us. (If they would like to communicate how it felt to be them, they should feel free to get in touch.)<br />
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So we entered the neonatal unit with a history which was bound to make things difficult:<br />
<ul>
<li>We knew that the unit did not routinely actively treat babies with prenatally-diagnosed trisomy 18 - in fact, had told us that they had never done so before.</li>
<li>We'd had a long fight to obtain treatment which involved a great deal of scheming, manipulating and planning on all sides, and was not at all the 'following through a process' that you'd imagine. </li>
<li>We knew that, while they had agreed to actively treat Rumer, they had done so under duress, and by no means all of the neonatal consultants actually agreed with the plan to do so.</li>
<li>Our strong impression was that the junior doctors did not know about the plan at all, and that the situation and history had not been communicated to them.</li>
<li>We also came from a very quick birth, marred by a difficult relationship with the neonatal consultant attending, with whom we had a history.</li>
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In addition, we came from a pregnancy in which we'd been able to take control (as the management was facilitated by an excellent obstetrician who was truly willing to work with parents) and with experience of being able to make informed choices at all stages, using various methods: open access to the medical notes, planning before appointments, and discussion. This was our first experience of being in the hospital 24/7, and of course, of being new parents to a sick baby.<br />
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So what was our experience? First of all, there was a great deal of cognitive dissonance. Our experience was that we'd fought hard; this was a unique situation; we expected a very short life for our baby; this was something that was not done. And from the minute we walked through the neonatal unit doors, there was an attitude of 'this happens every day', and 'go and get some sleep'. I am sure we presented to them as clingy, anxious parents from the start, as we didn't leave and go and get some sleep but instead stayed nearby, touching Rumer and being with her. Not knowing how long we had. We'd imagined a day, maybe two: why would we go and sleep?! But the nurses, who had little idea of the diagnosis and it's meaning (or so it seemed to us), seemed to think we were being ridiculous.<br />
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Secondly, we found the neonatal unit unique in its rules and routines. Having toured the unit during pregnancy, we'd anticipated the requirement to leave twice a day for nursing handovers, and even the requirement for leaving on ward rounds - though at times this was handled badly and caused Rumer some unnecessary suffering. I think it had been anticipated that we'd object to this compulsory banishment, but actually we found it useful for eating and taking a brief break.<br />
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However, while we'd anticipated these things, we hadn't anticipated the restrictions on reading Rumer's notes or the fact that staff considered that we should not be involved with decision-making about our baby's care. 'Parental involvement' seemed to consist of changing nappies. I am sorry, but for us, this was not involvement enough, or anything like it. We knew that the whole of Rumer's life may be spent here; this could be most of the time that we had with her. We wanted more than changing nappies. Beside that, we also had been accustomed to being part of the decision-making team - in fact, the deciding vote on the decision-making team.<br />
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This is not the culture on the neonatal unit at all. Parents are 'encouraged' to ask questions, but are expected to accept the answers given. The idea that parents might accept or decline treatment options, might want to discuss a variety of management approaches to an issue, or might have their own opinions (evidence-based or otherwise) on their child's care, was not considered. Chris at one point described the neonatal unit as being like a garage: you dropped your baby off, they gave you occasional progress reports, and you picked her up when she was fixed. This was an analogy that still rings true. Additionally, we found that the 'doctor as God' hierarchy still existed strongly in the neonatal unit. Interestingly, the other place it existed strongly was PICU, so I wonder if it is a feature of intensivists.<br />
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I think the biggest thing we found was that nobody could really understand our lack of trust. They didn't understand why we questioned them so much, why we didn't just trust "the gas was okay" but wanted to know what each element actually was and why it was out of range. We found out subsequently that some nurses didn't want to care for Rumer because we asked too many questions. Without knowing the history, they really didn't get why we wanted to read the notes, why we interrogated them on everything. In their view, we were controlling and 'difficult', possibly even 'aggressive'. In fact, we were anxious and mistrustful, and knew that some senior doctors on that unit considered it in our and our daughter's best interests for her to die. They would consider that failing to treat appropriately was, in fact, acting in her best interests.<br />
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We couldn't be neonatologists, but we could look things up, ask questions and assess their ability to answer them to determine their reliability. We did find people we could trust in the neonatal unit. There was an excellent neonatal nurse practitioner who could answer questions; we therefore did come to trust her answers. There were many people who may well have known the answers but didn't give them, either because they thought we didn't deserve them or because we made them nervous of giving them, but we didn't build much trust in them.<br />
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Trust was a significantly lacking feature between us and the staff, and it did make being in the neonatal unit a very anxious time for us, and the more anxious we got, the more controlling we became; the more questions we asked. The staff reaction to lack of trust, interestingly enough, was to become <i>less</i> trustworthy: to become more avoidant, to fob off more, to refuse to answer questions. For us, this was a never-ending cycle. We only broke it by leaving, hopefully never to return.<br />
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I think that what we <i>really</i> found hard on the neonatal unit, in the end, was the gossip culture. This, combined with the non-communication with parents (which I think in our case was reinforced by our own reputation of asking too many questions) was what, in our case, led to the most significant and irretrievable breakdown of communication and trust.<br />
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We call this 'the saga of the notes'. At some point I'll go into this in detail, but here's a very basic version.<br />
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We were given permission to read the notes by one neonatal consultant (against unit guidelines), so we carried on reading them. One day, a nurse objected, and as we only later found out, went to another consultant, who said no, we couldn't read the notes. Sadly this was never communicated to us, by her or anyone else. So when we asked as usual to read the notes, our 'error' was to happen to ask the other nurse in the room, while our nurse was out of the room. At the time, we had no idea it was an issue, but it soon became common gossip that we were doing this in order to sidestep the new rule, in order to act sneakily. Especially when we did it again (still with no idea that the rules had changed).<br />
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Gossip escalated, as clearly was the culture, and the notes were hidden from us. Nurses were colder to us. We were at a loss to understand these changes. This escalated to a series of meetings involving mediation, and was eventually resolved in our favour shortly before we left the unit: we were allowed to read the notes as long as no other parents were in the room. By that point, any possibility of positive relationships were long gone. I still think it is ridiculous how relationships were destroyed over something so insignificant. Gossip culture and poor communication were the primary contributors to this.<br />
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So how does it feel to be a parent of a baby with trisomy 18 on the neonatal unit? For us it was constantly anxiety-provoking, it was stressful, it was demanding, and we never could trust them. I have no desire to go back. I am pretty certain they have no desire to have us back. Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-578194603194364722016-04-20T15:00:00.000+01:002017-11-14T15:55:57.592+00:00Comfort care or torture care?<h3 class="postsubtitle">When palliative care goes wrong</h3>
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I admit that I don't think 'palliative care only' should be the routine way of managing all infants with trisomy 18. I think there are ethical questions to answer about this, especially when a child with T18 presents with few additional medical problems.<br />
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However, I accept that this may well be appropriate for some children with T18 who have complex presentations, and I feel that, as we don't have strong evidence for or against treatment for other children, in the end, parental choice should be deferred to, and some parents will opt for a palliative approach.<br />
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<br />
This post is not a criticism of parents who opt for a palliative approach: it is simply a discussion of situations in which palliative care is mismanaged, with children ending up with inadequate care, and unnecessary pain and suffering is caused simply because nobody is willing to take the lead and implement a well thought-out palliative care plan.<br />
<br />
I have seen this happen a number of times, and it is uncomfortable to watch. It seems to happen in particular circumstances.<br />
<br />
<br />
<h4>
The parents who don't want to make decisions</h4>
<br />
Some parents, for whatever reason, are reluctant to make a clear decision about where their limits lie. They feel guilty about limiting care, but at the same time do not wish to opt for a fully active approach. They tend to go along with what is offered to them. Some of them will outright state that they do not wish to make a decision.<br />
<br />
These parents are tough to work with for medical professionals, who often feel a degree of paternalism and so willingly shelter these parents from having to make clear cut decisions. They routinely offer limited care, and parents go along with this.<br />
<br />
If someone sits down and makes a clear-cut palliative care plan with these parents, then this situation can work out okay. But if they don't, what you end up with is a child born, offered limited care, and discharged home. The child then has a crisis; the parents have no clear plan for managing a crisis and so end up coming into hospital, where immediate treatment is offered since a limited care plan has not been agreed. The child is, for example, put on CPAP and a drip is set up. These interventions make it difficult for the child to move to a hospice or home.<br />
<br />
The parents may have a preference for minimal medical care, but are not willing to make a decision to withdraw care and move home for the child to die. So the child sits in limbo, being given a level of care which is inadequate, but nobody makes a clear decision to withdraw. This situation can only be broken by parents managing to make a decision, or a medical professional taking a paternalistic lead and telling the parents that withdrawal of care is the best option. Sometimes, if a medical professional is frank with the parents about the need to make a decision, they will be able to do so.<br />
<br />
This situation is best avoided by agreeing a limited care plan prior to birth.<br />
<br />
<br />
<h4>
The parents who want active treatment and the hospital which doesn't want to give it</h4>
<br />
This situation is very common, and contributes to a great deal of unnecessary pain and suffering for children with T18.<br />
<br />
Two very typical examples of this:<br />
<ol>
<li>A child with T18 is prenatally diagnosed. The parents state consistently that they want everything done for their child. However, they have little awareness of what is normally offered in neonatal care. They are reassured that their child will be offered treatment according to clinical condition; they are told the child will receive oxygen and a feeding tube and temperature control. They are unaware that this is <i>not</i> full treatment. They go into the birth of their child expecting equal treatment and are not told that they will not get it.</li><br />
<li>A child with T18 is born, struggles, and is not doing well. Medical staff do not want to admit that they are not giving full treatment, so more interventions get added in. Perhaps a drip is implemented because the child has an <a href="http://www.nhs.uk/Conditions/oesophageal-atresia/Pages/Introduction.aspx" target="_blank">oesophageal atresia</a> that they are unwilling to fix, so they give the child <a href="http://medical-dictionary.thefreedictionary.com/total+parenteral+nutrition" target="_blank">TPN</a> via the drip. Perhaps the child needs more breathing support, so they concede to <a href="https://en.wikipedia.org/wiki/High_Flow_Therapy" target="_blank">high-flow therapy</a>. Sometimes they end up in a situation where the child is born and <i>does</i> do well, so they rush them home, only to return in a crisis and receive emergency treatment. Neither palliative care nor active treatment is practised.</li>
</ol>
<br />
The other example is often the postnatally-diagnosed child who does well at first, possibly with some interventions pre-diagnosis. Nobody is really willing to begin discussions about the ongoing care plan with the parents, because they don't want to upset them with the poor prognosis, and because the reality is all the hospital are prepared to offer is palliative care. The child goes home with some support but no plan.<br />
<br />
They return in a crisis and the hospital is itself practising palliative care, so nothing much is done. Perhaps the oxygen is turned up; maybe they start antibiotics; possibly some blood tests, but either way after some low-level tinkering, they suggest the family goes home. No investigations are done. The family is led to believe, however, that they are receiving full treatment. The family goes home, but returns again in a crisis. This cycle repeats until the child dies, and then the death is blamed on trisomy 18.<br />
<br />
These situations, which do not benefit the children caught in the middle, are best resolved by frankness on the part of the hospital. Half-truths and cover-ups lead to a lot of suffering. Medical professionals need to be frank about what they are prepared to offer and what they are prepared not to. They need to explain the options, even if they discuss them and say, "We would not offer that to your child." The parents have the opportunities to escalate, pursue alternative providers or come to terms with a palliative approach.<br />
<br />
<br />
<h4>
So what makes for good palliative care?</h4>
<ol>
<li>Frank discussions between medical professionals and parents about what is on offer and what is appropriate for this child.</li>
<li>Clearly agreed plans for limited care that are agreed by all parties, and that travel with the child.</li>
<li>A plan for managing crisis events that avoids hospital admission wherever possible and facilitates early discharge to home or hospice.</li>
<li>Support and training for parents to manage their child at home. Preferably 24/7 access to a paediatric palliative care team which supports the family.</li>
<li>Parents who are able and willing to make decisions for their child. If families refuse to make decisions that are in the child's best interests, then the medic has a duty to ensure the child's interests are protected.</li>
</ol>
Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-45844440426645328442016-04-14T15:00:00.000+01:002017-11-14T15:55:16.116+00:00Rumer's Story, part 16<h3 class="postsubtitle">Appointments again</h3>
<br />
<div class="postcontext">Sunday 28th to Monday 29th June 2015<br />
26 weeks pregnant</div>
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<br />
So on Sunday the 28th June, we met Chris's parents for lunch in <a href="http://www.woodlandsrestaurant.co.uk/" target="_blank">Woodlands</a> in Marylebone, a vegetarian Indian restaurant we'd frequented a number of times. We showed them the latest scan pictures and told them Rumer's name. I'd anticipated that most people would, at best, take time to get used to her name - after all, it was hardly in the top 100 - but everyone immediately proclaimed to love it. I still have no idea if they meant it or not. My parents, whom we'd told on the phone, also claimed they liked it.<br />
<a name='more'></a>
<br />
On the Monday, we'd ended up somehow with a busy schedule. Chris was working an early shift; we then had an appointment with the Dale midwife Mollie at home; then a lunch meeting with Nelly Lister, the yoga teacher, in an effort to recruit a doula; and finally a vet appointment as our orange cat Tom had managed to tear his ear in a fight. Frustratingly, both the cats got ill while we were having all our problems with Rumer. We spent nearly as much time at the vet's as the hospital!<br />
<br />
Chris was not having fun at work at the time. I was fortunate to still be off. My GP kept wanting to sign me off, and every time I was about to go back, something happened to keep me off for longer. He just about managed to get home as Mollie arrived at the door. I invited her in while Chris got changed and rushed downstairs. Mollie, like myself, never was one for accepting cups of tea etc, only glasses of water, so there was no ability to delay.<br />
<br />
We shared with Mollie our experience with the antenatal class and Khushi Holloway's appointment. We had a long list of <a href="https://drive.google.com/file/d/0B-ypPwtOCUqWWUxTNXZFeWVGcm8/view?usp=sharing" target="_blank">questions</a> about stillbirth. Mollie decided that most of them were too clinical to answer herself and suggested we email Khushi Holloway with them, along with a copy of our <a href="https://drive.google.com/file/d/0B-ypPwtOCUqWQURLc0NBVzhxNTQ/view?usp=sharing" target="_blank">stillbirth plan</a>, to check everyone was happy with it. We also shared our new research with her regarding survival and treatment for T18. Honestly, I think Mollie, like most midwives, didn't know a lot about T18, so this information was as new to her as it was to us. She suggested we share that, too, with Khushi.<br />
<br />
I declined the pointless random blood glucose testing in favour of my glucose tolerance test next week. I accepted a physio referral for mild pelvic girdle pain, and Mollie invited us to the team picnic at the weekend. We rushed out of the house, late to meet Nelly Lister for lunch on the local high street.<br />
<br />
Nelly Lister was fine except that she had kippers for lunch and we are both vegans. We had a veggie breakfast, which was actually quite nice. Nelly wasn't prepared to commit to being our doula herself but suggested she could contact the regional rep, and they could maybe see if there were any doulas who were keen to help. She suggested that if there were, a rota would be useful. We were happy with that. She asked us to forward her our stillbirth plan and she would discuss it with the regional rep for <a href="https://doula.org.uk/" target="_blank">Doula UK</a>. (Unfortunately, their website had no contact details for regional reps or for people in our sort of situation.)<br />
<br />
Nelly very kindly paid for lunch and we went home to take Tom to the vet for a follow-up after his ear needed to be glued when he got into a scrap with another cat. His ear was healing well, but he needed to keep the cone and stay indoors for a couple of weeks. This did not make Tom happy, but on the other hand, perhaps it was a good thing when we were out of the house so often.<br />
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<a href="https://2.bp.blogspot.com/-yIC-wSBjuq0/Vw0eyxvwJvI/AAAAAAAAAUs/_t2xYCH0faQbiYBotx3UzI7X6nz7SceEACLcB/s1600/IMG_4304.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Our cat Tom with a damaged ear in a head-cone, looking annoyed at not being able to go out." border="0" height="240" src="https://2.bp.blogspot.com/-yIC-wSBjuq0/Vw0eyxvwJvI/AAAAAAAAAUs/_t2xYCH0faQbiYBotx3UzI7X6nz7SceEACLcB/s320/IMG_4304.JPG" title="" width="320" /></a></div>
<br />
We had a cardiology appointment coming up the next day, and a scan on the Thursday. We had also been chasing Elysia Crouch up for the neonatology appointment; all this new information: we wanted to discuss it and agree our approach. We underestimated quite how difficult that would be...<br />
<br />
<br />
<h6>
Stillbirth questions</h6>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-OtACB_IofXU/Vw0ZtA6XvII/AAAAAAAAAUQ/uIwje7YF2XM24GmvsC035AqwND4OuXoNg/s1600/2015-06-28%2BStillbirth%2Bquestions.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="Stillbirth questions" border="0" height="200" src="https://3.bp.blogspot.com/-OtACB_IofXU/Vw0ZtA6XvII/AAAAAAAAAUQ/uIwje7YF2XM24GmvsC035AqwND4OuXoNg/s200/2015-06-28%2BStillbirth%2Bquestions.png" title="* Click image for quick view
* Click caption to open document" width="141" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><b><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWYTFLS2cyVG1mWWc/view?usp=sharing" target="_blank">Questions</a></b></td></tr>
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<br />
<h6>
Stillbirth plan</h6>
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<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-Rnru-p2YkDw/Vw0bmmxNSUI/AAAAAAAAAUg/1skX5VhMrwsFV6kqs7yybFXpIHBbEUi6ACLcB/s1600/Birth%2Bplan%2BCH01-1.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="Stillbirth plan, page 1" border="0" height="200" src="https://1.bp.blogspot.com/-Rnru-p2YkDw/Vw0bmmxNSUI/AAAAAAAAAUg/1skX5VhMrwsFV6kqs7yybFXpIHBbEUi6ACLcB/s200/Birth%2Bplan%2BCH01-1.png" title="* Click image for quick view&#10;* Click caption to open document" width="141" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><b><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWZlhDaWNUZThyWUU/view?usp=sharing" target="_blank">Page 1</a></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-ID7etwZyOKg/Vw0bmn7F89I/AAAAAAAAAUc/Hby2-O28Bfkqsl6RdJb4fts0GLJY4bA9QCLcB/s1600/Birth%2Bplan%2BCH01-2.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="Stillbirth plan, page 2" border="0" height="200" src="https://4.bp.blogspot.com/-ID7etwZyOKg/Vw0bmn7F89I/AAAAAAAAAUc/Hby2-O28Bfkqsl6RdJb4fts0GLJY4bA9QCLcB/s200/Birth%2Bplan%2BCH01-2.png" title="* Click image for quick view&#10;* Click caption to open document" width="141" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><b><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWVnpvTkx0VUJicUE/view?usp=sharing" target="_blank">Page 2</a></b></td></tr>
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-Us4UE_RrGS8/Vw0bmpOp_7I/AAAAAAAAAUY/WzrM6ZH09aMU9-YKpgEvhWrrrSCmUpKpwCLcB/s1600/Birth%2Bplan%2BCH01-3.png" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="Stillbirth plan, page 3" border="0" height="200" src="https://2.bp.blogspot.com/-Us4UE_RrGS8/Vw0bmpOp_7I/AAAAAAAAAUY/WzrM6ZH09aMU9-YKpgEvhWrrrSCmUpKpwCLcB/s200/Birth%2Bplan%2BCH01-3.png" title="* Click image for quick view&#10;* Click caption to open document" width="141" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 14px; text-align: center;"><b><a href="https://drive.google.com/file/d/0B-ypPwtOCUqWX1J6S2JTNlhHTVE/view?usp=sharing" target="_blank">Page 3</a></b></td></tr>
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<span style="float: left;"><b>
<a href="http://www.rumersrainbow.co.uk/2016/04/rumers-story-part-15.html">← Part 15</a>
</b></span>
<b><a href="http://www.rumersrainbow.co.uk/p/rumers-story.html">Contents</a></b> | <b><a href="http://www.rumersrainbow.co.uk/p/rumers-story-whos-who.html" target="_blank">Who's who</a></b>
<span style="float: right;"><b>
<a href="http://www.rumersrainbow.co.uk/2016/07/rumers-story-part-17.html">Part 17 →</a>
</b></span>
</div>Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com0tag:blogger.com,1999:blog-213041984619043061.post-56978234636908975592016-04-11T15:00:00.000+01:002017-11-14T15:54:51.346+00:00How to counsel parents: Part 1<h3 class="postsubtitle">A guide for consultant neonatologists</h3>
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Dear Consultant Neonatologist,<br />
<br />
Welcome to our blog! Every day we keep hearing more stories of parents having been given misinformation, half-truths and even lies by your colleagues. So we thought we should write a guide on how to counsel parents who have had a prenatal or postnatal diagnosis of trisomy 18 (or trisomy 13, or in fact any life limiting condition) and who plan to continue their pregnancy.<br />
<a name='more'></a>
<br />
I'm guessing this subject isn't covered much in training, so this is our helpful guide just for you. Please feel free to share with your colleagues and juniors.<br />
<br />
<ul>
<li><b>Part 1</b> will cover what <i>not</i>  to do when counselling parents with a new diagnosis of T18. This is based on the experiences of parents who have endured these conversations.</li>
<li><b>Part 2</b> will give advice on what to do when counselling these parents, and some general tips.</li>
<li><b>Part 3</b> will model a sample conversation between Dr Excellent (the consultant neonatologist we all dream of) and Johnny and Jackie, a couple with a prenatal diagnosis of trisomy 18 for their child.</li>
<li>In <b>Part 4</b>, Dr Excellent will have a conversation with Mary and Michael, a couple with a postnatal diagnosis of trisomy 18.</li>
</ul>
<br />
<br />
<h4>
So, on to Part 1</h4>
<br />
This is what NOT to do when counselling a family with a prenatal diagnosis of trisomy 18 (with many of the points drawn from our own experiences).<br />
<br />
<ul>
<li>Don't be an hour and a half late without at least calling and giving them the opportunity to get lunch or rearrange.</li>
<li>Don't simply introduce yourself, sit down and say nothing, expecting the parents to start the meeting. You are the host here: start.</li>
<li>Don't use the phrases 'incompatible with life' or 'unsurvivable' because, as <a href="http://neonatalresearch.org/2012/07/23/our-children-are-not-a-diagnosis-the-family-experience-of-trisomy-13-and-18/" target="_blank">Keith Barrington</a> so rightly points out, any of us can look on the internet and find out you're a liar in 5 minutes.</li>
<li>In fact, on that note, don't lie full stop. We will probably find out, and you'll look stupid. Don't tell us that no-one has ever been treated for trisomy 18 before, or that babies with trisomy 18 don't come off ventilators, or nobody with T18 lives longer than two years. How are we supposed to trust you if you lie?</li>
<li>Do acknowledge that there are a wide variety of outcomes. Death in the first week of life may statistically be the most likely outcome, but it is not certain.</li>
<li>Don't use unnecessarily technical language that we don't understand in order to baffle us. It is your job to communicate effectively with us. Do it.</li>
<li>Equally, don't talk down to us when we indicate that we do understand. Patronising us will not help.</li>
<li>Don't pretend that the palliative approach you favour is in fact full treatment. Blow-by oxygen and ventilation are in different leagues (and you know it!)</li>
<li>On that note, explain all the options to us so that we can choose. If you're not prepared to offer one of those options, or you don't recommend it, tell us.</li>
<li>Don't criticise other countries' practice. Just because somewhere does something differently it doesn't mean that they are wrong. Ethics are not 'different in America' (whatever our neonatologist thinks).</li>
<li>Don't tell us scary stories, in which you deny or withdraw care without parental consent, for example. Is this supposed to build our trust in you? Or perhaps you want us to go elsewhere.</li>
<li>Don't act as though you are the arbiter of our child's best interests and we are simply blinded by love. You do not know our child's interests better than us.</li>
<li>If you're going to quote stats and facts at us, make sure you know what you're talking about. (As an example, T13 survival is not better than T18: it's the other way round.)</li>
<li>Don't use 'quality of life' against us. The evidence for a good quality of life for children with T18 is overwhelming, and actually our children will not be 'vegetables'.</li>
<li>If we are clearly offended by a comment, apologise, and don't repeat it.</li>
<li>Don't act as if you are right and we are wrong: we simply disagree.</li>
<li>Don't threaten us with escalation. Mediation, ethics and even court are simply the next steps in a process. They shouldn't be used as threats.</li>
</ul>
<br />
<br />
<h4>
Real-life examples!</h4>
<br />
Here, for interest (and reassurance), are some examples of how NOT to do it from parents who have experienced both prenatal and postnatal diagnoses of trisomy 18. Worldwide: this is a global issue.<br />
<br />
<br />
<h5>
On the certainty of death</h5>
<ul>
<li>"I hope [your daughter] will die soon." (Meant kindly, in that a drawn-out death wouldn't be a good thing.)</li>
<li>"He/she's going to die soon/quickly." (Many, many parents reported this comment from their apparently psychic neonatologists.)</li>
<li>"If it were my child, I would just let her die."</li>
<li>"I'd say we're looking at two weeks for survival." (Child is now 3 months old and counting.)</li>
<li>"She will live a few weeks, maybe months." (Child is now five years old.)</li>
<li>"She has a zero percent chance of living."</li>
<li>"She is going to die right now." (100 days later...)</li>
<li>"You can take her home to die or leave her here to die."</li>
<li>"She won't be one of the 10% who lives past her first birthday."</li>
</ul>
<br />
<br />
<h5>
They may be psychic but....</h5>
<ul>
<li>"We're not miracle workers!" (On why they would do nothing for the baby once born.)</li>
</ul>
<br />
<br />
<h5>
On why treatment would not be appropriate</h5>
<ul>
<li><table><colgroup><col width="130"></col></colgroup><tbody>
<tr><td valign="top"><b>Neonatologist</b>:</td>
<td>It would not be appropriate to resuscitate your daughter.</td></tr>
<tr><td valign="top"><b>Parent</b>:</td>
<td>Why not?</td></tr>
<tr><td valign="top"><b>Neonatologist</b>:</td>
<td>Because she has Edwards syndrome.</td></tr>
<tr><td valign="top"><b>Parent</b>:</td>
<td>Why does that mean it's not appropriate to resuscitate her?</td></tr>
<tr><td valign="top"><b>Neonatologist</b>:</td>
<td>Because she has Edwards' syndrome.</td></tr>
</tbody></table>
<div style="text-align: right;">
<i>...repeated ad infinitum</i></div>
</li>
<li>"The more you do, the longer he will live, the more you'll bond with him and it will be harder when he dies."</li>
<li>"Don't even bother with an echocardiogram, you don't want to prolong his life with cardiac surgery."</li>
<li>"Any kind of resuscitation whatsoever would be too aggressive."</li>
<li>"It would be torture to let your baby have cardiac surgery."</li>
</ul>
<br />
<br />
<h5>
On policy</h5>
<ul>
<li>"It's not our policy to resuscitate babies with trisomy 18." (Upon asking for the policy, it didn't exist.)</li>
<li>"The things needed to help your baby are things this hospital is just not willing to do."</li>
<li>
<table><colgroup><col width="130"></col></colgroup><tbody>
<tr><td valign="top"><b>Neonatologist</b>:</td>
<td>We don't do surgery on babies with trisomy 18 in this trust.</td></tr>
<tr><td valign="top"><b>Parents</b>:</td>
<td>Never?</td></tr>
<tr><td valign="top"><b>Neonatologist</b>:</td>
<td>No, never.</td></tr>
<tr><td valign="top"><b>Parents</b>:</td>
<td>But [cardiologist] said you don't have a policy.</td></tr>
<tr><td valign="top"><b>Neonatologist</b>:</td>
<td>Oh no, we don't have a policy.</td></tr>
</tbody></table>
</li>
</ul>
<br />
<br />
<h5>
On why you wouldn't want an apnea monitor at home</h5>
<br />
Surprisingly, this came up for more than one set of parents.<br />
<br />
<ul>
<li>"You don't want to turn your home into an intensive care unit. Usually the first apnea the parents notice is the one that kills the baby."</li>
<li>"It would be very distressing for parents to resuscitate their child." (Far more distressing than finding them dead, apparently.)</li>
<li>"The machine will alarm constantly and annoy you."</li>
</ul>
<br />
<br />
<h5>
On quality of life</h5>
<ul>
<li>"[Survivors] just lie there like dolls."</li>
<li>"He won't even know you love him and he'll be in a vegetative state."</li>
<li>"She'll never be normal, she'll never move."</li>
<li>"She'll be a vegetable, she'll never know who her parents are."</li>
<li>"She'll be a blob."</li>
<li>"She will be a vegetable, no smile, no expression on her face."</li>
<li>"There is no point in her surviving, she'll be severely mentally retarded."</li>
</ul>
<br />
<br />
<h5>
On inflicting suffering on family</h5>
<ul>
<li>"Having [your son] will ruin your family and marriage."</li>
<li>"[Your other children] will suffer."</li>
<li>"You won't have a life."</li>
<li>"Put her away, you can't take care of your other children [well enough] because of her."</li>
</ul>
<br />
<br />
<h5>
Or, even worse, the medical team</h5>
<ul>
<li>"You can't deliver in this hospital, you might upset the staff."</li>
</ul>
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<h5>
On 'moving on'</h5>
<ul>
<li>"Move on with your life." (While pregnant with the child with T18.)</li>
<li>"You can have more children."</li>
<li>"It's like if you have a dog that died, you just replace it." (On having another child.)</li>
<li>"You're young, you can have more children: go home and let her die."</li>
<li>"You will not have a life because of this child."</li>
<li>"Have another baby so your nursery won't be empty."</li>
</ul>
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<h5>
The avoidance of names</h5>
<ul>
<li>"I was 'the Edwards mum'; [she] was 'the Edwards baby', even though we told everyone her name."</li>
<li>"They referred to [child's name] as 'It'." (More than one set of parents had this experience.)</li>
<li>"They referred to [child's name] as 'the trisomy 18 patient'."</li>
</ul>
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<h5>
The misinformation</h5>
<ul>
<li>"Trisomy 18 can be very painful for the fetus."</li>
<li>"There is no way to tell whether an NG tube is in the stomach or in the lungs, so the baby will aspirate and die."</li>
</ul>
<br />
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<h5>
The paternalism</h5>
<ul>
<li>"The decision to resuscitate [was made] by the doctor as he felt some parents weren't capable of making the right decision."</li>
</ul>
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<h5>
On resource issues</h5>
<ul>
<li>"We need the bed space. Take him home to die."</li>
<li>"You'll be bottom of the list for any medical intervention."</li>
</ul>
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Sadly, this is just a sample of many experiences reported by parents in which resources were diverted from their children.<br />
<br />
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<h5>
The grossly inappropriate</h5>
<ul>
<li>"There's nothing here to save." (On why not to bother resuscitating a child with T18.)</li>
<li>"[Your husband] did something terrible in a previous life."</li>
<li>"You have other children . You don't want to waste your money on this child."</li>
</ul>
Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com1tag:blogger.com,1999:blog-213041984619043061.post-22722943271888814542016-04-08T15:00:00.000+01:002017-11-14T15:52:45.032+00:00Research Friday: Does intervention prolong life?<h3 class="postsubtitle">Kosho T & Carey J (2016)</h3>
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For our third <i>Research Friday</i> post, we thought we'd look at a recent paper that addresses a question that many physicians and parents often ask, and over which even more frequently disagree: does medical intervention actually improve survival in children with trisomy 18 (or trisomy 13)?<br />
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Parents who request interventions for their children often encounter opposition, commonly because physicians consider these interventions to be of no, or minimal, benefit for these children. In our second meeting with our own neonatologist (who had firmly stated her opinion that any intervention, beyond possibly a feeding tube and oxygen, was too aggressive), we asked:<br />
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"Would you be willing to change your mind if treatment improved survival by 20%?"</blockquote>
She replied: "It doesn't."<br />
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So, according to this recent paper from Kosho and Carey (authors who, admittedly, may have some pro-intervention bias) - who is right?<br />
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<h4>
About the paper</h4>
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The full paper is available, for a fee, here:<br />
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<b><a href="http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37610/abstract" target="_blank">Does medical intervention affect outcome in infants with trisomy 18 or trisomy 13? (Kosho T & Carey J, 2016)</a></b><br />
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An abbreviated version is available free on pages 6-7 of the recent <a href="http://www.internationaltrisomyalliance.com/uploads/1/4/8/3/14838122/ita_e_newsletter_2016_issue_3.pdf" target="_blank">newsletter <span class="linkwarning">(PDF)</span></a> of the <a href="http://www.internationaltrisomyalliance.com/" target="_blank">International Trisomy 13/18 Alliance</a> - an enormously helpful organisation whose website is full of good research that is always worth checking out.<br />
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The paper focuses primarily on two recent studies. I hope to look at one of these, <a href="http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.37495/abstract" target="_blank"><b>Meyer et al (2016)</b></a>, next week: a US population study of survival of children with trisomy 13 and trisomy 18. The other, <a href="http://www.ncbi.nlm.nih.gov/pubmed/26728763" target="_blank"><b>Subramaniam et al (2016)</b></a>, looks at a cohort of infants with trisomy 18 in Alabama.<br />
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There is also a brief overview of other literature regarding interventions and survival for children with trisomies 13 and 18.<br />
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<h4>
Criticism of Subramaniam et al (2016) </h4>
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<i>Subramaniam</i> was an interesting paper (and I will try to get hold of a copy) as it is one of the very few studies to conclude that aggressive intervention does not prolong life. It did conclude that when you compared infants who received no intervention to those who received some interventions, the intervention group did better (had longer lives). However, it subdivided the intervention group into those who received 'aggressive' and those who received 'non-aggressive' interventions, and found that each subgroup had the same median survival length; they therefore concluded that aggressive interventions do not extend life in children with trisomy 18.<br />
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Kosho and Carey had some criticisms of this paper: notably, that the author's extensive definition of aggressiveness included any corrective surgery, feeding tube placement, cardiopulmonary resuscitation, TPN and mechanical ventilation aimed at prolonging life. The cases were all described. Kosho and Carey decided to look at them themselves, dividing the cases into 'palliative care at birth and no mechanical ventilation' and 'no palliative care at birth, with mechanical ventilation'. The survival then was 8 days in the former group and 399 days in the latter group. A significant increase in survival for 'aggressive intervention'!<br />
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Does this indicate that 'full' treatment improves survival but 'semi-active' achieves little?</h5>
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This is interesting. I have seen myself how 'semi-active' treatment seems to achieve very little. Semi-active treatment often occurs because parents want full treatment and hospitals don't want to give it (hence the half-way house) or because parents themselves elect for this approach, believing that full treatment is too invasive, but not wanting full-on palliative care.<br />
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For some children this approach meets their needs adequately, but for a lot, it seems to leave them in a limbo of inadequate care, with the child never getting well enough to go home. They are the cases that doctors characterise as 'active treatment' at conferences when they say that treatment becomes a crusade and forces children into suffering. Often, this middle ground is where the suffering is.<br />
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Children who have high-level treatments suffer, sure, but often less than children who receive insufficient treatment for their needs. For example, if a child is struggling to breathe and really needs intubation and mechanical ventilation but is given CPAP, this extends the child's suffering rather than solving the problem.<br />
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These two different interpretations of this study's results perhaps suggests that 'half-way house' care does not extend survival, but full care <i>does</i> make a difference. This would be in line with the <b>Goc et al (2006)</b> study, which also suggested that intervention did not extend survival markedly (although their results are highly questionable) but withheld 'aggressive' treatments from children with a confirmed diagnosis.<br />
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Kosho and Carey on Meyer et al (2016)</h4>
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The Meyer study is a population-based study from the US, where routine treatment for children with trisomy 13 and trisomy 18 is becoming increasingly common, though not universal.<br />
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Perhaps unsurprisingly if you believe that treatment improves outcome, this study had the highest reported survival rates for children with trisomy 13 and trisomy 18 yet seen in a population study: 13.4% for T18 at 12 months and, even more surprisingly, 12.4% at 5 years. These figures certainly deserve a closer look (next week!) but they are very good survival figures, particularly for a population study for an area in which there is not a standard approach to treatment, and for which some infants will, by parental choice or otherwise, have received full-on palliative care.<br />
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Do these figures reflect the increase in interventions, and can we conclude from this improvement in survival that the increase in interventions is directly leading to an increase in survival, or is this simply a coincidental finding? Kosho and Carey suggest in their paper that the increasing survival of children with trisomy 13 and trisomy 18 in population studies (they point out the high survival figures of <b>Wu et al (2013)</b>) suggest that interventions are prolonging life in this group.<br />
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<h5>
Can we confidently state that the high survival in Meyer (2016) suggests that intervention improves survival? </h5>
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I could buy this in the Meyer study. My experience suggests that increasing numbers of children in the US are having interventions, therefore we could link these high five-year survival rates to the interventions.<br />
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However, I just don't buy that increasing numbers of children in the UK (<i>Wu et al</i> is a UK population study) in the period studied were receiving full interventions - or any interventions at all, for that matter. I think the <i>Wu et al</i> high survival statistics deserve closer analysis and, in fact, may be the key to establishing whether the Meyer results are really down to the interventions or whether we are in danger of confusing correlation with causation in this case.<br />
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My view is - and I say this having not yet spent long looking at the Meyer study, and it's a while since I spent time on <i>Wu</i> - that Kosho and Carey are in great danger of doing exactly this. I do not think we can safely say that children are surviving longer because of interventions based on increasing survival in population-based studies.<br />
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Factors that may contribute to longer survival in population-based studies may, for example, include the improvements in prenatal screening, which mean that many fetuses are simply removed from the studies by virtue of termination of pregnancy after diagnosis. Fetuses who present with more, or more severe, medical issues are perhaps over-represented in this group. Thus, those who remain undetected are more likely than ever before to be the healthiest children, and this translates into better survival statistics.<br />
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There are likely to be other factors also contributing to increasing survival in population-based studies. I would argue that <i>Wu et al</i> in many ways discredits <i>Meyer</i>. It shows that the increase in survival in <i>Meyer</i> may simply be due to the fact that the general trend is for longer survival, regardless of intervention.<br />
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<h4>
Review of other evidence and conclusions from Kosho and Carey</h4>
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The paper then goes onto look at the other evidence for treatment, including the increasing evidence base for cardiac surgery in improving survival for children with trisomy 13 and trisomy 18. They quote a number of both familiar and less familiar papers, although not in detail, and there is no discussion about whether cardiac surgeries were performed later or earlier, or selection criteria, etc.<br />
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They quote an interesting paper, <b>Nishi et al (2014)</b>, which looked at oesophageal atresia and showed that children with trisomy 18 who had full repairs had better one-year survival figures than those who had palliative surgeries. They also refer to <b>Nelson et al (2012)</b>, which does show increasing intervention for children who have trisomy 13 or trisomy 18, but does not relate the interventions to survival. They of course refer to <b>Kosho</b>'s own work of 2006, which remains one of the most useful research papers to cite regarding the impact of intervention overall.<br />
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Kosho and Carey conclude in this paper that "the body of evidence indicates that intervention does make a difference in survival in infants with trisomy 13 or trisomy 18", although cautiously adding that this makes it a reasonable option to discuss with parents - hardly a ringing endorsement.<br />
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Closing thoughts<b> </b></h4>
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My thoughts are that, in 2016, we haven't really moved forward very far from 2006. 10 years on from the original Kosho paper, we have a lot more literature to get to grips with, but really we can still only say from the limited evidence that intervention does seem to prolong life in children with trisomy 13 and trisomy 18. But the evidence remains limited in quality and far from convincing. We don't seem to have made great strides in establishing which interventions help which children; in understanding the risks of cardiac surgery for individual children with trisomy 18; in developing a good understanding of the unique needs of these children.<br />
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As to this paper, it is a useful run through the literature. A good starting point for families exploring intervention, and a useful rebuttal of the <i>Subramaniam</i> paper (which will no doubt be used against families), but it does not really answer the question conclusively as to whether intervention prolongs life in children with trisomy 18. I think that is because this question is unanswerable at the present time.Helenhttp://www.blogger.com/profile/01015353088165699300noreply@blogger.com0