Complaint about Rumer’s care, part 5

Pregnancy 2

• PREGNANCY 2: Failure to consider all care management options

  • In summary
  • We would like

Concerns about the care of Rumer Gomez

Pregnancy 2: Failure to consider all care management options

2.Failure to consider all care management options

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 palliative care only pathway, and that we were not supported in making informed choices for our daughter’s care.

Complaint about Rumer’s care, part 4

Pregnancy 1 & Appendices 36

• PREGNANCY 1: Delays in care-planning

  • In summary
  • We would like
• APPENDIX 3: [George Donnachie] emailRequest to delay multidisciplinary meeting (03 Jul 2015)
• APPENDIX 4: Our emailProfessionals to see (11 Jun 2015)
• APPENDIX 5: [Ida Leigh] emailInitial neonatal care plan (14 Jul 2015)

  • Term birth
  • Preterm birth
  • Further action planned
• APPENDIX 6: [Khushi Holloway] emailProvisional obstetic/midwifery care plan (29 Jul 2015)

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.

Complaint about Rumer’s care, part 3

Preamble & Appendix 2

• Preamble
• APPENDIX 2: Amalgamated list of outcomes we would like

  • B PREGNANCY

    • 1. Delays in care-planning
    • 2. Failure to consider all care management options
    • 3. Access to further opinions
    • 4. Attitude of staff
  • C [CLINICAL ETHICS COMMITTEE]

    • 1. Referral to [CEC] and involvement of patients/parents
    • 2. Handling of Rumer’s cas by the [CEC]
  • D BIRTH

    • 1. Neonatal management at birth
    • 2. Other concerns
  • E NEONATAL UNIT

    • 1. Medical care
    • 2. Nursing
    • 3. Communication & culture
  • F [BLYTON WARD]

    • 1. Infection control
  • G PAEDIATRIC INTENSIVE CARE UNIT (PICU)

    • 1. Medical care
    • 2. Nursing
    • 3. Comminucation & culture
    • 4. Care during Rumer’s final 24 hours
  • H PAEDIATRIC CARDIOLOGY

    • 1. Cardiology issues
  • I PAEDIATRIC PALLIATIVE CARE

    • 1. Palliative Care issues
  • J OVERALL

    • 1. Trisomy 18
    • 2. Working with parents
    • 3. Professionals’ meetings
    • 4. Other issues

A bit of an administrative update, this one: see below for the short introductory part of the complaint, followed by Appendix 2, 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.

Complaint about Rumer’s care, part 2

Covering letter (Appendix 1)

• Appendix 1: Covering letter with this document

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 withthese are on track now and further updates should follow more quickly.

Below is the covering letter we sent with our (very long!) complaint about Rumer’s care (also included in the complaint document itself as Appendix 1).

Complaint about Rumer's care, part 1

One year ago today...

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.

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.

The myth of the irrational parent

Will parents really do anything to save their child?

This article 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.

The accepted message is:

• The doctors are dispassionate and able to accept that the child is desperately ill and there is nothing to be done.
• 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 because any parent would do the same.

Rumer's Story, part 20

Neonatal & Palliative Care meeting: II

Thursday 2nd July 2015
27 weeks pregnant

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.

Rumer's Story, part 19

Neonatal & Palliative Care meeting: I

Thursday 2nd July 2015
27 weeks pregnant

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.

Non-Invasive Prenatal Testing

• What is Non-Invasive Prenatal Testing?
• What does NIPT screen for?
• If I get a positive result on a non-invasive test, does that mean my baby definitely has trisomy 18?
• If it is just a screening test, why am I paying £600 for it? Why not just have the normal NHS screening?
• Can a positive NIPT result be wrong?
• Can a negative NIPT result be wrong?
• My first baby had trisomy 18. Will the test detect my first baby's DNA in my blood, and does that make it more likely that I'll get a positive result?
• I'm having twins. Can I have NIPT?
• So I've decided to go ahead with NIPT, but Panorama, NIFTY, MaterniT21, Harmony... what's it all about?
• It is worth asking...

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.

Either way, here is the low-down on non-invasive testing.

Rumer's Story, part 18

Palliative care is not more important!

Wednesday 1st to Thursday 2nd July 2015
26 to 27 weeks pregnant

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.

Rumer's Story, part 17

Cardiology appointment

Tuesday 30th June to Wednesday 1st July 2015
26 weeks pregnant

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.

Read beyond the headlines!

Which of these statements about trisomy 18 are backed up by research?

• Intervention improves survival to 1 year (Meyer et al 2015)
• Intensive (or aggressive) intervention does not improve neonatal survival (Subramaniam et al 2015)
• Infants with trisomy 13 survive longer than infants with trisomy 18 (Houlihan & O'Donaghue 2013)

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.

VIDEO: Neonatal ethics conference presentation

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.

This is our presentation.

On winning

Even if you do 'win', there are a lot of losses

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.

“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.”

The responsibilities of parents

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:

• "No other parents have ever requested this."
• "You are exceptional parents. Other parents wouldn't understand the notes."
• "Not all parents want to be involved in medical decisions; some parents want us to make the decisions."

Palliative care vs active treatment

Stereotypes and Realities

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):

• Palliative care (also referred to as 'comfort care')
• Active treatment (also referred to as 'full treatment')

However, what you are told, or understand, about these choices is likely to be very different from the realities.

Why I don't hate trisomy 18

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.

It's just not the way I feel.

To a hospital somewhere in the UK

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).

Full, partial or mosaic?

Trisomy 18. What is it? Most people can grasp pretty quickly that it means that you have three copies of chromosome 18.

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.

See this image for a picture of the chromosomes of a boy with T18.

What do you call your doctors? Jane or Dr Smith?

This article from the BMJ was retweeted by a couple of our neonatal consultants: Is it Jane or Dr Smith?

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:

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.