16 March 2016

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.

So, when, on Wednesday 10th June 2015, the phone rang at 11am, I jumped to get it. Chris, who was sleeping after his night shift, leapt out of bed and we turned on the speaker phone. The midwife on the other end said, "I'm afraid I have some bad news", and at that moment I think we both hoped she'd say "Down syndrome". But of course she said, "I'm afraid the amniocentesis results show that your baby has trisomy 18/Edwards' syndrome. I'm terribly sorry." I wasn't shocked: it felt like a confirmation of what we knew already. She asked us if we wanted to come in that day to talk to the consultant or whether we'd prefer to wait until our appointment, a couple of weeks later. She said she'd call us back in half an hour to give us time to decide.

We went downstairs and cried and talked. We discussed some very vague ideas about home birth and memory-making, and we called family and told them. We decided we would go in and see George Donnachie that day. It was a good plan; it gave structure to the day. When the midwife, Elysia Crouch, called back, we told her we'd decided to come in and she invited us to come to the Fetal Medicine Unit at 16.30 to see him.

So we headed into the hospital. If I recall, we drove in. We were calmer by now; we'd accepted the news. Chris called in to take the night off work. We needed to make plans. George Donnachie was in fact excellent. I have to say that their handling of breaking 'bad news' was perfect in this hospital: from the midwife to the consultant, they had it spot on. He saw us very quickly in the quiet room (we were to see a lot of them in this pregnancy!) He was very kind, very calm. He discussed options, but wasn't at all pushy about termination. He'd have known we probably wouldn't be keen, but he mentioned it; when we said no, it was never mentioned again.

We asked some questions about trisomy 18, including the apparently unanswerable one for health professionals: "What do babies with T18 die of?" We mentioned the idea of home birth, and also talked about stillbirth. George was casual about the idea of a home stillbirth at the time, and about the risk of infection in the event of an in-utero death. He introduced us to Elysia Crouch in person, and she gave us her email address. The plan was for us to email her with a list of all the health professionals we would like to see, and we agreed that would be a good idea.

We went out for dinner after at Amico Bio, one of our favourite restaurants. That was a quiet dinner out, but good. We also felt like we were feeding the baby good food to taste every time we went out to eat, as it may never get to eat it itself. (We are both very keen on food!)

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