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.

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.

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.

How to counsel parents: Part 1

A guide for consultant neonatologists

Dear Consultant Neonatologist,

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.

Research Friday: A life worth giving?

Withdrawal of treatment from disabled newborn infants
Wilkinson D (2011)

Welcome to our second 'Research Friday' post, where we look at, comment on, critique and generally tear to pieces research or guidelines that relate directly or loosely to trisomy 18. Please add your comments!

This week I wanted to look at a piece that I came across, about the circumstances under which it is permissible to withhold or withdraw treatment from a newborn baby with a disability.

'Slow code': Trisomy 18 in the UK

The US folk call it 'slow code'; we don't have a phrase for it in the UK, but we probably should. I might suggest that 'negligence', 'substandard care', 'lying' and 'collusion' are not too strong for this practice, which is widespread in the UK for children with trisomy 18.

Palliative care: calling a spade a spade

It's okay to choose palliative care. There, I've said it. It is okay to choose not to pursue full interventions for your child with trisomy. It's okay to have limits. Your limits may not be my limits; I even think there are ethical questions about failing to offer some interventions, but I also think that parents generally should have the right to act in whatever they perceive to be their child's best interests, and when there are no clear-cut, evidence-based answers as to what is in a child's best interests, I think parental choice should be deferred to. So it is okay to choose palliative care.

When physicians say "No"

Your next steps

This post is for parents who find themselves in the situation of being told that treatment will not be offered to their child even though they think that treatment is in their child's best interests.

This is likely to be the experience of most families who want invasive treatments for a child with trisomy 18 in the UK.

Active treatment or palliative care?

Choosing an approach in trisomy 18

When your baby is first diagnosed with trisomy 18, you may well ask, "What can be done?" And you may get an answer from the medical team of, "Nothing." If it is a postnatal diagnosis you may assume they will continue to offer basic medical care, such as feeding and breathing support. If it is an antenatal diagnosis you may be told your baby will be "incompatible with life", and "We will keep baby comfortable."

However, this is not your only option. Fundamentally, when your child is diagnosed with trisomy 18, you have two choices: