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.

Rumer's Story, part 16

Appointments again

Sunday 28th to Monday 29th June 2015
26 weeks pregnant

So on Sunday the 28th June, we met Chris's parents for lunch in Woodlands in Marylebone, a vegetarian Indian restaurant we'd frequented a number of times. We showed them the latest scan pictures and told them Rumer's name. I'd anticipated that most people would, at best, take time to get used to her name - after all, it was hardly in the top 100 - but everyone immediately proclaimed to love it. I still have no idea if they meant it or not. My parents, whom we'd told on the phone, also claimed they liked it.

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: Does intervention prolong life?

Kosho T & Carey J (2016)

For our third Research Friday post, we thought we'd look at a recent paper that addresses a question that many physicians and parents often ask, and over which even more frequently disagree: does medical intervention actually improve survival in children with trisomy 18 (or trisomy 13)?

Rumer's Story, part 15

Not such a lethal diagnosis

Wednesday 24th to Saturday 27th June 2015
25 to 26 weeks pregnant

So we got on with our plans. We submitted an enquiry through the SOFT UK website. We ordered some tiny, tiny baby clothes online (from here and here), and Rumer's rainbow blanket.

Rumer's rainbow blanket!
We thought this would service nicely as her burial shroud.

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?

Rumer's Story, part 14

Getting organised!

Tuesday 23rd to Wednesday 24th June 2015
25 weeks pregnant

So we arrived back from Berlin with motivation and a better sense of how to move forward: making a stillbirth plan had clarified some of the things we needed to get on with. Our 'to do' list went:

1. Practical arrangements for a home stillbirth
2. Buy clothes and things for the baby
3. Contact photography charities regarding photographs of the baby
4. Discuss what family would want in the event of a stillbirth
5. Explore the practicalities and legalities of home burial
6. Look for a doula
7. Prepare a birth bag

Kicks count! For trisomy babies too

Most of us who become pregnant in the UK will have heard of the charity Kicks Count, which works to raise awareness of stillbirth and to encourage mothers to monitor their baby's movements and to seek help if there are any concerns. If you haven't heard of them, I encourage you to check them out.

Today's article, however, is about how we can use movement monitoring to reduce the risk of stillbirth in trisomy 18. Very often on trisomy groups, I hear mothers remark that their baby is moving less today, and the next we hear, they've had a stillbirth. This is often because of the extra difficulties in monitoring movement in trisomy 18:

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.