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.

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

Rumer's Story, part 13

Berlin and a name!

Friday 19th to Tuesday 23rd June 2015
25 weeks pregnant

So we arrived at the hotel and checked in. We'd chosen the hotel because it had a vegan breakfast and a vegetarian restaurant attached (we always plan around the food) but it was a way out of town and not the most convenient. We ate that first night in the restaurant attached to the hotel - Bistro Bardot - and went to bed, not before checking in on the baby with the sonicaid. We knew she was a girl now, but we'd not yet named her. Our foray into the name books on our journey had got us to the letter B in name book number one.

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 10

Moving on from diagnosis

Wednesday 10th to Wednesday 17th June 2015
23 to 24 weeks pregnant

So we went home and started to make some decisions. We had to decide who we wanted to see, what we wanted. We knew nothing about trisomy 18. It is interesting looking back at what we wrote then. Chris wrote a Facebook post which stated that trisomy 18 is fatal, and I started a Mumsnet thread calling it a 'lethal diagnosis'.

We made a list of people we wanted to see and emailed it to Elysia Crouch.