The number of chromosomes our baby has.
Being pregnant with a baby with Down’s Syndrome is both exactly like every pregnancy, and completely different from your friends’ experiences. Everyone worries for their babies, two lines on a stick are no guarantee of anything, but knowing that your child will have issues – that’s hard.
I was very sick quite early on in this pregnancy. I’d previously had an ectopic pregnancy that nearly killed me and broke my heart, so I was nervous. My first scan was at 6 weeks; the embryo was in the right place, and the pain was just a fibroid playing up. There was even a heartbeat.
We told our families over Christmas, and our 12-week scan was early January. The day before the scan I told Justin, my husband, that I thought our baby had Down’s Syndrome; I just felt there had to be something. We laughed it off, however, and decided it was going to be a nice reassuring scan and it would be lovely to see the baby wriggling around.
The back of our baby’s neck was a bit thicker than usual, so they took some blood to see what was going on. They rushed the blood test through, and 45 minutes later the result came back: we had a 1:2 chance of our baby having Trisomy 21. We could have further testing or leave it at that. We decided we wanted to know, so they squeezed us in for a CVS later that morning. I was in tears, so we were shepherded into a side room. The hospital doesn’t like having pregnant women crying in corridors.
We had a two-second conversation:
‘If he does have Down’s do you want an abortion?’
‘I don’t think so.’
The wait was ages.
We were fetched to the procedure room – I had to sign so many forms. The needle was huge and painful. I cried out, and they had to hold me down. I was so tense from the shock and sadness of the morning that it hurt a lot more than it needed to. We were told the results would be back on Tuesday and they would give us a ring.
It was the longest weekend. Tears and uncertainty and a whole lot of research. We knew deep down what the results would be, but there was a flicker of hope it was all a bad dream. Tuesday came and went – no phone call. Wednesday I was at the hospital for the blood pressure clinic, so I went upstairs to see if there was any news. The senior midwife was about to call us, so she took me into a room and blurted:
‘I’m sorry, your son has Down’s Syndrome,’
swiftly followed, without a hint of irony, by:
‘Would you like to find out the gender?’
We’d been hoping to find out anyway – we wanted to know everything about our baby.
Then there was blurry talk of ‘choices’ and ‘shall we book you in for a termination?’ and the ARC (Antenatal Results and Choices) and Down’s Syndrome Association websites scribbled on the back of an envelope. We were booked in for another scan in the morning to look at his heart (half of kids with Trisomy 21 have congenital heart defects). I went home and cried some more. We’d come to terms with it over the weekend, but it was a relief to know, mixed with shock at the assumption that we’d want a termination based on the diagnosis, and huge surprise at the lack of information we were given.
Research had told us that most babies with chromosomal abnormalities don’t make it through the first trimester, so he was already doing better than most. However, there was still a huge risk of miscarriage. The average foetal loss rate between CVS and term ranges from 23% for women aged 25 to 44% percent for women aged 45. At 35, I hit the middle ground – a 32% chance of miscarriage.
His heart was OK. He had a strong dislike for scans and wriggled around so they couldn’t see much, but everything they could see was growing well and functioning as it should at this stage.
That scan may have been the deciding point. If his heart had serious problems, would a bad thing happening to us now be better than him undergoing painful surgery when he was so tiny with only a small chance of success? Luckily, aside from his extra chromosome he seemed fine – a happy and healthy little foetus, wriggling around and kicking nicely.
Around 90% of families with a prenatal diagnosis of T21 go on to have a termination. There is plenty of time to make the choice, as you can terminate a baby with ‘foetal abnormalities’ right up to 40 weeks. The important thing here is informed choice – but the hospital had given us very little information, and that generally negative.
We did our own research. We read studies, reached out to a friend who had her own beautiful little girl with Trisomy 21, found groups on Facebook, and talked to people who were living this reality.
It was tough – but we knew we could handle it. He was our son, and he had survived that far, against the odds – so we’d give him the best chance possible and leave it up to him. If he made it through the pregnancy and birth, we would do everything we can for this little chap.
We decided to tell people his name, so he could be a person rather than a diagnosis. Elliott was the name we’d chosen on our honeymoon after being wrapped in a Polynesian fertility blanket (yes – it was exactly as awkward as it sounds), so Elliott he was.
We sent an email to our parents, written and written again – with positive, specifically chosen words, links to websites with up-to-date information, pictures from the scan, and a request to be gentle with us as we were coming to terms with the child we were having, rather than the imaginary child we’d thought would be joining us.
Our families and closest friends were great for the most part – it took some of them a while to come around, but they were all supportive and never questioned our choice to ‘continue with the pregnancy’.
We told Facebook on Down’s Syndrome day – 21st March (21×3). We set up ‘Elliott Bingo’ to see how many reactions we could predict; there are so many misconceptions about Down’s Syndrome, and as we steered through the rest of the pregnancy it would be hard to dodge remarks like ‘They’re so happy!’, ‘They never grow up,’ and that dreaded piece about going to Holland!
Medically it meant that we had lots more scans than normal. It was lovely to see him so often, and reassuring to have his heart checked every month. It was a weird mix of having really excellent care and being treated like second-class citizens by attitude, as if our baby was ‘less’. The hardest thing was people asking if we’d thought about termination at almost every appointment, and repeatedly having to justify our choices. I wrote a top sheet for our notes, explaining that we were excited to meet him, and if it wasn’t relevant to his treatment I didn’t want to discuss our ‘choices’. Even up to the day before he was born, I was told as my blood pressure was checked that it wasn’t too late to have a termination.
We were told quite early on to expect him any time from 30 weeks, but there were no indications as the pregnancy went on that he would be born early. Our 36-week scan showed he was around 5lbs and the sonographer said that if he was born that day he’d be fine. Elliott took this as a green light – that night we were back in the hospital with what looked like a urine infection (paracetamol didn’t cut it!) but was actually labour. It was short and hard, and eight hours later Elliott was born. His Apgar score was 10/10 and he was doing very well. He spent two nights in NICU to get his blood sugar up and sit under a lamp for his jaundice, and after five days we came home.
I didn’t really enjoy my pregnancy. It was lovely growing a person but the fear was quite something, especially with that added extra. What I wish somebody had said when we got the diagnosis is this: ‘Trust that you’ll get over the grief, be realistic about the impact it’s going to have and make the right choices for you.’
All the worry of pregnancy and the initial uncertainties are gone now. Would I love him? Would I be able to see past his diagnosis? Yes and yes. He’s now a ten-week-old wriggler. He has a few issues – some related to T21, some because he was preterm, and some that are just random. We don’t know what the future holds for him, but we will do everything to make sure he is loved and has every chance to reach his potential.