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.

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 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.

Comfort care or torture care?

When palliative care goes wrong

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.

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.

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?

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.

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.

Keeping it Simple - Caesarean section or vaginal birth?

Which is best for a baby with trisomy 18?

This is the Keeping it Simple summary - read the detailed version here.

This question comes up all the time on trisomy groups. It came up for us. Our initial plans were to have a caesarean section, but we eventually decided to opt for vaginal birth after a lot of discussion with different professionals and taking all our circumstances into account. What I would say is that there is no clear-cut answer as to which is the best option for a baby with trisomy 18.

Caesarean section or vaginal birth?

Which is best for a baby with trisomy 18?

This is the detailed version - read the Keeping it Simple summary here.

This question comes up all the time on trisomy groups. It came up for us. Our initial plans were to have a caesarean section, but we eventually decided to opt for vaginal birth after a lot of discussion with different professionals and taking all our circumstances into account. What I would say is that there is no clear-cut answer as to which is the best option for a baby with trisomy 18.

Rumer's Story, part 9

Trisomy 18!

Monday 8th to Wednesday 10th June 2015
23 weeks pregnant

We kept waiting for the phone to ring. I expected it to ring on Tuesday, but it never did. I've since learned that positive results take longer, as they double-check. I think I kind of knew anyway, but I hoped for T21, or some rare genetic condition that wasn't 'lethal'. However, everything I read kept leading me back to T18. I couldn't seem to escape it.

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:

Keeping it Simple - Amniocentesis: Yes or No?

This is the Keeping it Simple summary - read the detailed version here.

So here you are: maybe you have a 'high risk' result from a combined screening test for T18; maybe you've just had your 20-week scan and they've picked up a bunch of anomalies that they suggest mean T18; maybe you've got a positive result from a Harmony or similar non invasive fetal screening test for T18. Either way you are being offered amniocentesis to confirm the diagnosis and you're not sure whether to have it.

Amniocentesis: Yes or No?

This is the detailed version - read the Keeping it Simple summary here.

So here you are: maybe you have a 'high risk' result from a combined screening test for T18; maybe you've just had your 20-week scan and they've picked up a bunch of anomalies that they suggest mean T18; maybe you've got a positive result from a Harmony or similar non invasive fetal screening test for T18. Either way you are being offered amniocentesis to confirm the diagnosis and you're not sure whether to have it.