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 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.

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."

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).

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.

How did it feel to be the parent of a baby with trisomy 18 on the neonatal unit?

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.

The conspiracy theorists on the internet

Hey, have you heard the one about the father who resuscitated his own baby daughter at birth when the physicians who'd promised to do it decided not to?

How about the one where the baby self-extubated and the neonatologist didn't re-intubate, despite there being no parental consent to withdraw treatment?

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.

The "professionals' meeting"

Creating a consistent message or colluding against parents?

This had a slightly less provocative title when I first wrote it. I was going to call it The professionals' meeting: ensuring consistency or a barrier to collaborative working with parents? but actually I think the current title more accurately reflects my feelings.

Professionals' meetings. Those of us who are "difficult parents", who have children with complex medical issues and who are asking for treatment outside the norm, will probably experience at least one professionals' meeting about our child and their care. We may or may not know about it (and that is an issue in itself) but it will happen.