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.

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.

Rumer's Story, part 8

Genetics appointment, amnio and a wedding!

Wednesday 3rd to Sunday 7th June 2015
22 to 23 weeks pregnant

So we went to the Genetics appointment, which was on a different site to the maternity appointments. It was a much older building, and much quieter. It was an interesting place. We admired an art piece on the wall that used stripy socks to represent chromosomes. I still have an ambition to make one myself, but with three copies of chromosome 18.

Rumer's Story, part 7

Considering amnio

Tuesday 26th May to Wednesday 3rd June 2015
21 to 22 weeks pregnant

So there we were, with bad news piled on top of us. I said at the time to my mother: "A baby with problems with its heart, lungs and brain - that can't be good." I'm not sure what our families thought; they had mixed reactions. I think some thought we should or would be ending the pregnancy. I don't know about the rest.

Rumer's Story, part 6

Echo & MRI results

Tuesday 26th May 2015
21 weeks pregnant

We were shown into the quiet room by Dr Cook, where we were joined by Evan Marshall and a cardiac liaison nurse who was introduced to us as June Winter.

Professor Marshall explained the scan findings: our baby had her heart shifted to the right side and rotated. Her left ventricle was around half the size of her right, whereas they should be roughly equal. She also had a narrowed aortic arch through which the blood flow was reversed, and she had two superior vena cavae ('bilateral SVCs'). All embryos start with two, but by this gestation you would expect one to have disappeared. He drew a lot of sketches.

Rumer's Story, part 5

MRI scan and echocardiogram

Friday 22nd to Tuesday 26th May 2015
21 weeks pregnant

We spent the weekend googling information on Congenital Diaphragmatic Hernia (CDH) and calling family to update them. We were both worried and surprisingly normal. I remember reading all the survivors' stories on the CDH website and then braving reading the stories of the non-survivors and crying. It was a long bank holiday weekend.

Rumer's Story, part 4

Anomaly scan (continued)

Thursday 21st May 2015
21 weeks pregnant

15 minutes later, George Donnachie invited us back in. We had both expected to go back into the office in which we'd met previously, so we were both surprised to be shown into a scan room and for me to be pointed towards the bed. It was clear that Dr Donnachie wished to perform another scan. There were several other people in the room. I don't remember us being introduced to them; maybe we were, maybe we weren't.

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 1

Some early niggles

January to March 2015
Conception to 12 weeks pregnant

After a fairly long time of on-and-off trying to conceive and a very early miscarriage in September 2014, you can imagine how pleased we were on the 29th January 2015 to see this...