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.

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: Saving Babies' Lives

NHS England (2016)

Welcome to our first '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 thought we'd look at the new NHS England guidelines on Saving Babies' Lives, partly because it just came out in its final version this week, partly because we ourselves used the draft version of the guidance to argue for frequent scans when we knew that I had low PAPP-A - and therefore I'm interested in what they come up with - and partly because guidelines on reducing stillbirths are rather relevant to the trisomy community (with its very high risk of stillbirth) even when they are not T18-specific guidelines.

Maximising your baby's survival potential

Or: How to have more time with your baby

Babies with trisomy 18 don't live long, apparently. If you believe half the medical professionals, if you get a week you're doing well, and a month - well, be grateful. Those who live a year are anomalies and you'll be told to be 'realistic' if you mention them. They haven't heard that there are actually adults with trisomy 18 - tell them the oldest known survivor was 50 years old and you'll be called a liar.