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.

Rumer's Story, part 3

Meeting the Fetal Medicine consultant & Anomaly scan

Wednesday 29th April to Thursday 21st May 2015
17 to 21 weeks pregnant

On 29th April, we had our second midwife appointment, again at home. I had developed some pregnancy anxiety, had seen the GP and had started CBT that day through the local community service. I was impressed by how quick they'd been to see me. The anxiety had been very focused around things going wrong with the pregnancy and one of the things we worked on and I repeated to myself in sessions was 'most people have healthy babies'; it seems kind of ironic now, along with Mollie's assertion in the first appointment that everything would be fine. A friend had also told me not to worry because things would be fine. Perhaps it is wisest not to say that.

Rumer's Story, part 2

PAPP-A and meeting the obstetric consultant

Friday 20th March to Thursday 16th April 2015
12 to 16 weeks pregnant

We'd had our first midwife appointment at home just after our 11-week scan, on 20th March. It had been fairly standard, with no concerns. I'd asked about whooping cough vaccine and the midwife Mollie had promised me a leaflet. I'd also admitted to some anxiety about how things were going and Mollie assured us that 'everything would be okay'. After the nuchal scan showed the low PAPP-A, my anxiety had triggered me into frantic googling and I'd discovered that low PAPP-A (exactly what was considered to be low varied) was associated with poor fetal growth. I'd also been doing a course on customised growth charts at work which happened to mention that low PAPP-A was linked to a seven-fold increase in the risk of stillbirth.