Pregnancy 1 & Appendices 36
Concerns about the care of Rumer Gomez
Pregnancy 1: Delays in care-planning
Pregnancy
1.Delays in care-planning
This was a common theme throughout the antenatal period, in which we found significant difficulties in accessing some specialisms, notably NeonatologyNeonatologySee Neonatal Unit Who’s Who entry. 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.
- 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 CLHAbbreviation for Central London Hospital, the pseudonym for the adult hospital that provided Helen’s maternity care/London PaedsAbbreviation for London Paediatric Hospital, the pseudonym for the children’s hospital that provided the vast majority of Rumer’s care, 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 George DonnachiePseudonym for the Fetal Medicine & Obstetric consultant stated in his email of 3rd July 2015 (Appendix 3, 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.
- Accessing the Neonatal team in order to discuss care options was challenging. We requested an appointment with them shortly after diagnosis (see Appendix 4, 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 FMUFetal Medicine UnitWho’s Who entry midwife team to enquire about what was happening. We left two messages on the voicemail but received no reply. Eventually, we were contacted by FMU midwife Elysia CrouchPseudonym for the midwife who served as our link to the Fetal Medicine Unit about another matter and requested that the neonatal appointment was arranged. We were then offered an appointment with the Paediatric Palliative Care teamPaediatric Palliative Care TeamWho’s Who entry. After we stressed the importance of the neonatal appointment, we were offered an appointment on the same day.
- After meeting the Neonatal team, the consultant we saw (Dr Ida LeighPseudonym for the Neonatologist who initially served as Rumer’s named consultant) 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.
- When we attended the second Neonatal appointment on 21st July 2015, Dr Leigh 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 14th July and agreed a detailed provisional care plan (see Appendix 5, 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.
On 29th July, a provisional obstetric/midwifery care plan was also devised and circulated by Consultant Midwife Khushi HollowayPseudonym for the Consultant Midwife who oversaw the midwifery aspects of Helen’s care (Appendix 6, 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.
See Overall point 2.d)i2.d)i below, page 64, for details.
- During the 21st July Neonatal appointment, it was agreed that second opinions would be arranged from The Simms HospitalPseudonym for one of the hospitals from which a second opinion was arranged and St. Sebastian’s HospitalPseudonym for one of the hospitals from which a second opinion was arranged. There were significant delays in arranging the second opinions, so that they didn’t happen until we’d already reached agreement with CLH/London Paeds, which rendered the opinions pointless and a waste of time for all concerned. We also weren’t informed of the appointment at Seb’sAbbreviation for St. Sebastian’s Hospital, finding out about it only coincidentally on the morning of the appointment.
In summary
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.
We would like:
- 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.
- An undertaking that Central London Hospital NHS Foundation TrustPseudonym for the hospital trust that managed the hospitals that provided Rumer’s and Helen’s care 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.
See Appendix 2 (page A‑7) for an amalgamated list of outcomes we would like.
Concerns about the care of Rumer Gomez
Appendix 3: George DonnachiePseudonym for the Fetal Medicine & Obstetric consultant email – Request to delay multidisciplinary meetingMultidisciplinary meetingA meeting of some or all members of a multidisciplinary team. See MDT (below) for details. (03 Jul 2015)
George DonnachiePseudonym for the Fetal Medicine & Obstetric consultant03 July 2015 16:31
- June WinterPseudonym for the Cardiac Liaison Nurse who was our link to the Fetal Cardiology Unit
- Zainab GurneyPseudonym for the initial lead midwife of Steeple Team
- Teresa CloverPseudonym for the subsequent lead midwife of Steeple Team
- Khushi HollowayPseudonym for the Consultant Midwife who was involved in managing the pregnancy
- Mollie EvansPseudonym for our named midwife from Dale Team
- Clement StuartPseudonym for the Head of Neonatology
- Ida LeighPseudonym for the neonatologist who initially served as Rumer’s named consultant
- Tegan BlackmanPseudonym for the Palliative Care consultant
Lenna RallsPseudonym for the lead midwife of Dale TeamRE: HRHRHelen’s initials- professionals meetingDear Zainab,Quite a few people have seen Helen & her partner.
She is now only 26+ weeks. Can I ask that we hold this MDTMDTAbbreviation for Multi Disciplinary Team. Refers to a group of healthcare professionals with different areas of expertise who are working collaboratively on a case.In this instance the actual reference is to an MDT meeting, also known as a Multi Disciplinary Meeting (MDM) or professionals’ meeting. at present.
She saw the neonatalNeonatal UnitWho’s Who entry & palliativePaediatric Palliative Care TeamWho’s Who entry team yesterdays - Ida Leigh & Tegan Blackman.
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 SBSBAbbreviation for stillbirth is significant.
So in the first instance lets get to 34 weeks. She has seen all the key people and has shared her thoughts.
Once we get to 34 weeks, lets get the MDT going and then plan from there.
I saw her yesterday and will be seeing her in 3 weeks.
Thank youBest wishesGeorgeEmail signature
Concerns about the care of Rumer Gomez
Appendix 4: Our email – Professionals to see (11 Jun 2015)
Helen Roper <email address>Thu 11/06/2015 19:53Elysia CrouchPseudonym for our Fetal Medicine Unit link midwife <email address>Chris Gomez <email address>Helen Roper hospital number (Trisomy 18)Dear ElysiaThank you so much to you and everyone for seeing us the other day and talking through our options. Everyone in the FMUFMUFetal Medicine Unit 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.
We feel quite strongly we would like to speak with the bereavement midwivesBereavement midwife teamSee Who’s Who entry as soon as possible to discuss the normal procedures and options around both a stillbirth and a neonatal deathNeonatal deathThe death of a liveborn baby within their first month of life as we obviously could be faced with a stillbirth at anytime and would like to have some time to make plans.
We have an appointment with cardiologyCardiologyRefers to Fetal Cardiology on the 30th 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
We would like to speak to the neonatologistsNeonatologistsSee Who’s Who entry and palliative carePalliative CareRefers to the Paediatric Palliative Care Team 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.
In terms of FMU we today got a letter for an appointment on the 18th June but I understood this would be cancelled and rescheduled for the week of the 29th June. It would be great to find out when the new appointment is. Mr DonnachiePseudonym for our Fetal Medicine/Obstetric consultant also talked about possibly being able to access FMU for a scan rather than PAUPseudonym for the Pregnancy Assessment Unit 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 Donnachie 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?
In terms of midwives it was suggested we should engage with the Steeple TeamPseudonym for the midwifery team that dealt with high-risk pregnancies midwives and we had an initial appointment scheduled for 9.30am on the 18th 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 (DalePseudonym for our existing midwifery team) is happy to share care or to hand over whichever is most appropriate.
We did feel that we would like to have a conversation with geneticsGeneticsSee Who’s Who entry 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 full karotypeFull karotype [sic]The full results from the amniocentesis that led to Rumer’s trisomy 18 diagnosis.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 karyotype of all the chromosomes had been analysed. is available in case anything else shows up.
Thanks again so much for all your and the FMU team’s support and help.
We are available by email or phone anytime (Helen: mobile phone number. Chris: mobile phone number. Landline: home phone number) We will be away from the late afternoon of the 18/6 until the 24/6 if this helps at all with arranging appointments.
Best wishesHelen & Chris
Concerns about the care of Rumer Gomez
Appendix 5: Ida LeighPseudonym for the neonatologist who initially served as Rumer’s named consultant email – Initial neonatalNeonatal UnitSee Who’s Who entry care plan (14 Jul 2015)
Ida LeighPseudonym for the neonatologist who initially served as Rumer’s named consultant14 July 2015 11:41
- George DonnachiePseudonym for our Fetal Medicine/Obstetric consultant
- Tegan BlackmanPseudonym for the Palliative Care consultant
- Khushi HollowayPseudonym for the Consultant Midwife who oversaw the midwifery care
Evan MarshallPseudonym for the cardiologist who served as Rumer’s Fetal Cardiology consultantRE: Helen RoperDear George, Tegan and KhushiWe have discussed Helen's baby extensively at our NICUNICUNeonatal Intensive Care Unitthe highest of three levels of care in the Neonatal Unit. Also used to refer to the unit as a whole. consultant meeting today, with the aim
of formulating clar management decisions about what we feel is appropriate. Will put this down formally but in summary:Term birth
We feel it is appropriate to offer non-invasive support:-
- Assessment at birth, neonatalNeonatalSee Neonatal Unit and cardiacCardiacRefers to Paediatric Cardiology (neonatal to assess general condition and give non-invasive respiratory supportNon-invasive respiratory supportBreathing support that does not invade the body.Generally speaking, invasive respiratory support refers to intubationthat is, a tube inserted into the patient’s windpipe through which a machine provides breathswith everything short of that being classed as non-invasive.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 nasal cannula oxygen (delivered through tubes positioned just inside the nostrils) is unclear. if required and requested by parents, see below)(cardiac to assess exact anatomy with echoEchoShort for echocardiograma specialised ultrasound scan of the heart, 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)
- Standard basic respiratory resuscitationStandard basic respiratory resuscitationThis 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 Resuscitation and support of transition of babies at birth protocol. , in case it may help baby make the respiratory transition from fetal to infant phase. This entails up to 5 inflation breathsInflation breaths
Breaths(from a bag valve mask 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. followed by 1 minute of ventilation breathsVentilation breathsBreaths(from a bag valve mask in a hospital setting) that are intended to allow the patient’s lungs to function while they are not breathing for themselves, as in adult CPR..- Admission to SCBUSCBUSpecial Care Baby Unitthe lowest of three levels of care on the Neonatal Unit. for comfort careComfort careUnder 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 leftfor example, by treating pain or distress.Also known as palliative care. if requested by parents
- Comfort care whether the baby stays with parents or is on SCBU
As a neonatal unit, we feel that we would not be able to offer invasive intervention including:
- Ventilation (intubationIntubationThe insertion of a breathing tube into the patient’s windpipe through which a machine can provide breaths (
ventilate) directly into their lungs./IPPVIPPVIntermittent Positive Pressure Ventilation: like intubation and ventilation, but through a facemask rather than a tube in the patient’s windpipe. or CPAPCPAPContinuous Positive Airway Pressure: 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.)- Monitoring including satsSatsShort for oxygen saturation: a measure of how much oxygen the patient’s blood is carrying. A routine part of hospital monitoring. etc (as we will not be acting to escalate care, hence rendering monitoring non useful)
- Invasive testing eg EGGEGG [sic]Typo for EEG, or electroencephalogram: a test that measures brain activity, in which electrodes are attached to the patient’s head while a recording is taken. scalp electrodes or the potential use of antiepileptic drugsAntiepileptic drugsDuring 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 apnoeas (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 EEG showed seizure activity. if
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)Preterm birth
We feel comfort care only would be appropriate.
Further action planned
We also feel that it is important to seek our cardiology, cardiac surgeryCardiac SurgerySee Paediatric Cardiac Surgery and paediatric surgeryPaediatric SurgerySee Paediatric Surgery colleagues' opinions now on what intervention they feel is appropriate, so that we have a consolidated CLHTPseudonym for the hospital trust that managed the hospitals at which Rumer and Helen received the vast majority of their care overall picture of management options asap from all professional groups involved.
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
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 NICU,, should another NICU feel able to support these procedures.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. EEG 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
and perception of how their child dies is terribly imporatnt (eg they may derive great comfort from knowing thateverything has been doneto try and extend their time with her) but we do not feel able to support imposing objectively unpleasant procedures on Rumer (insertion of linesLinesTubes 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., intubation, scalp
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.After we have a concerted CLHT opinion from ourselves, cardiology, cardiac surgery and paed surgery. we could present this case to the local Trust ethics comitteeTrust ethics committeeSee Clinical Ethics Committee and also to the Trust legal teamTrust legal teamSee Legal Department for their opinion. It will take at least a couple of weeks to get that going, so an early MDTMDTAbbreviation for Multi Disciplinary Team. Refers to a group of healthcare professionals with different areas of expertise who are working collaboratively on a case.In this instance the actual reference is to an MDT meeting, also known as a Multi Disciplinary Meeting (MDM) or professionals’ meeting. asap would be good. It is a shame Evan 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 fetal med meetingFetal Med meetingRefers to a weekly multidisciplinary meeting hosted by the Fetal Medicine Unit. 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 in utero. today to try and get MDT set up with yourselves, cardiology/cardiothoracicsCardiothoracicsRefers to the Paediatric Cardiac Surgery departmentso-called because cardiothoracic surgeons operate on organs inside the chest (or thorax), including the lungs as well as the heart. and paed surgery??
From an overall management (including surgical/cardiology/neurology) point, we could then aim to offer Helen and Chris 2nd/3rd opinions (CharltonCasual name for Charlton University Hospital (pseudonym) and Seb’sCasual name for St. Sebastian’s Hospital (pseudonym)/RCHAbbreviation for Royal Children’s Hospital (pseudonym) would be nearest centres to offer cardiac/surgical subspecialities and NICU). From a
purely NICU2nd point of view (re: would another NICU support ventilation etc), I will contact Ignas BoytonPseudonym for (presumably) a neonatologist at [RCH] at RCH now, so that we have that in process.Will obviously discuss further with all involved!
(note: Neonatal consultants present at meeting - Clement StuartPseudonym for the Head of Neonatology (also a neonatal consultant), Sean CharlwoodPseudonym for a neonatal consultant who was also a member of the [Clinical Ethics Committee], Daisy-Ann BerginPseudonym for a senior neonatal consultant, Charan BatemanPseudonym for a locum neonatal consultant, Abriella BurltonPseudonym for a neonatal doctor whose grade appeared to be equivalent to that of a consultant, Jessie GalloPseudonym for one of the neonatal consultants, Ida Leigh. Will also consult Yehuda HamnettPseudonym for the neonatal consultant who would later take over the role of being Rumer’s named consultant and Daenerys AspreyPseudonym for the neonatal consultant who would eventually act as a sort of second named consultant for Rumer tomorrow. Rodney GreenlawPseudonym for the Clinical Director of Children’s Medicine and Neonatology (also a neonatal consultant) on A/L for 2/522/52Abbreviation for
two weeks.)BW,IdaEmail signature
Concerns about the care of Rumer Gomez
Appendix 6: Khushi HollowayPseudonym for the Consultant Midwife who became closely involved with the pregnancy emailProvisional obstetricObstetricSee Obstetrics department/midwiferyMidwiferySee Midwifery department care plan (29 Jul 2015)
Khushi HollowayPseudonym for the Consultant Midwife who became closely involved with the pregnancyWednesday, July 29, 2015 05:48 PM
- Ida LeighPseudonym for the neonatal consultant who initially served as Rumer’s named consultant
- George DonnachiePseudonym for our Fetal Medicine/Obstetric consultant
RE: CECAbbreviation for the hospital trust’s Clinical Ethics Committee (pseudonym) - Urgent referral FRIDAY 31st JULYDear GeorgeAs discussed at today's meeting, the principles for pregnancy care might be:
- Antenatal care should be largely in keeping with the
usualcare package. This can of course be tailored to Helen's individual circumstances. For example, additional USSsUSSUltrasound Scan and MRI 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.- We do not believe that it is appropriate to offer antenatal in-patient admissionAntenatal in-patient admissionThis 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. CTG 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. at 33 or 34 weeks33 or 34 weeksSince 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..
- We do not believe it is appropriate to offer three times daily cardiotocographsCardiotocograph (CTG)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. (CTGs) 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.
- 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.
- 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.
- 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.
- We would not consider delivery by elective caesarean section sooner than 39 weeks - the usual gestation for elective caesareans.
- 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.
Please could you
keep me in the loop with whatever you decide to submit to the ethics committee. I also think the submission should be approved by KeilanPseudonym for the Clinical Director of Women’s Services
and HeroPseudonym for the Head of Obstetrics.BWKhushi
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