Rumer's Story, part 20

Neonatal & Palliative Care meeting: II

Thursday 2nd July 2015
27 weeks pregnant

Keen to bring the discussion back to treatment options, Chris proceeded to describe our understanding of the pregnancy risks and how we wanted to mitigate them (eg. close monitoring, c-section). He wanted to show our thinking about how to manage the obstetric problems, since that was what we were most familiar with at this point, thinking that that would give Ida an idea of the general approach we wanted to take in order to set the tone for the discussion about postnatal management. He also wanted to illustrate that we were realistic about the high rates of stillbirth and neonatal death; that we were going into this with our eyes open.

Rumer's Story, part 19

Neonatal & Palliative Care meeting: I

Thursday 2nd July 2015
27 weeks pregnant

So we got back to the now very busy Fetal Medicine Unit (FMU) waiting room around 12:20 and waited. And waited, and waited. At 1pm, half an hour after the appointment should have begun, we spotted the neonatal consultant, Ida Leigh, chatting to George Donnachie; he ushered her into his room in his usual charming manner. And we waited; we remarked to each other that had we known it would be this long, we'd have had some lunch – by this time we were very hungry after our early start.

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.

Rumer's Story, part 17

Cardiology appointment

Tuesday 30th June to Wednesday 1st July 2015
26 weeks pregnant

So on the Tuesday, we went to our second cardiology appointment. Recalling how Professor Marshall had been happy to consider surgical options even in the most dire of situations last time, we were hopeful that he would remain open to considering these and other relevant treatments. However, we also knew that offering active treatment for babies with trisomy 18 was not usual practice in the UK, and we weren't sure whether the diagnosis would change his 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.

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.

Rumer's Story, part 12

To Berlin via Amsterdam

Thursday 18th to Friday 19th June 2015
25 weeks pregnant

So we were off! We had deliberately chosen (when we'd booked this trip to Berlin) to travel by train and boat. We both love long train journeys and ferries: they remind us of childhood trips, so we'd made that choice. Sadly it was neither a cheaper nor a quicker choice, so we'd decided to fly back.

Rumer's Story, part 11

Start of our new life

Thursday 18th June 2015
25 weeks pregnant

On Thursday, we got a taster of the life that was in store for us. Of exactly how busy our life was about to become.

We had decided to go to Berlin via ferry and train rather than flying, so we were taking the train to Harwich from Liverpool Street that evening, then the night ferry to Hook of Holland, and in the morning, the train to Berlin via Amsterdam. I think that when we made the bookings we'd imagined a slow Thursday, but of course it had now filled up with appointments.

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 9

Trisomy 18!

Monday 8th to Wednesday 10th June 2015
23 weeks pregnant

We kept waiting for the phone to ring. I expected it to ring on Tuesday, but it never did. I've since learned that positive results take longer, as they double-check. I think I kind of knew anyway, but I hoped for T21, or some rare genetic condition that wasn't 'lethal'. However, everything I read kept leading me back to T18. I couldn't seem to escape it.

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 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.

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...