I am writing to you, partly because I need to tell this story to someone. But partly because you have a platform and I hope that in telling it to you, you might be able to help get it out there so that someone in a similar situation might read it and feel comforted and maybe some of the medical professionals who read your blog might see some of the good practices we experienced (and some of the not so good practices) when going through this time. From speaking to others in the Down’s syndrome community, I know we are actually really lucky in how we found out about the diagnosis and that others have found the way it was delivered deeply traumatising, and it can truly taint their early experience of their child. He has now arrived and is a gorgeous but TINY 12 week old baby boy, called Aidan, who also happens to have an extra chromosome.’
For various reasons, but mostly the need to feel in control after a very traumatic first labour which ended in an emergency c section after several days, I opted to go private through my work place healthcare scheme. I wanted the reassurance of having the same obstetrician and midwife team throughout the pregnancy, the birth and the post natal period.
During both of my pregnancies I had declined the nuchal screening test I guess because I believed it wouldn’t impact my decision making process. I always felt quite confident doing it on point of principal because honestly I never really considered the possibility that I might have a child with Down’s syndrome, or any other syndrome. This was my second pregnancy, and so I gave it even less of a thought as I had already had a chromosomally typical baby boy two years prior and I was only 30. There wasn’t really any possibility in my mind that I would have a child with Down’s syndrome. So happy days, I declined, making my point around the ethics of screening (which I now view as significantly more complex) whilst safe in the knowledge it would be ok.
With the benefit of hindsight, the pregnancy was incredibly different to my first and possibly these were signs. I always felt very uneasy about the pregnancy and was much more concerned about miscarriage and prematurity. I had hypermesis gravidarum and was on medication to control it until 20 weeks. I had gestational hypertension from about 28 weeks, at which point my obstetrician said he wanted to see me more regularly and keep a closer eye on me. My bump was absolutely massive! I looked full term at about 6 months.
My 20 week anomaly scan came and went, everything looked fine. At every appointment with my obstetrician he would do a quick ultrasound just to check on the baby. Everything was always fine.
When I was 34 weeks pregnant I went in for my check up with one of the midwives and given my BP was so high now and I was feeling unwell, they asked me to stay so one of the obstetricians could check me out as they were concerned about pre-eclampsia. My usual obstetrician was away that week, so I saw one who was covering his case load. Oddly, she happened to be a specialist in maternal fetal medicine.
She took a look over me and noted that things did seem a little odd and she wanted me to come in more regularly for CTG monitoring and to get a growth scan the following day. I went home that day, rolling my eyes, thinking it was just all one more ailment of pregnancy and I couldn’t wait until this little one was here and this pregnancy nightmare would be over. I asked my mum did she want to come with me for the growth scan so she could see the baby and we could go for a nice lunch maybe. I had no idea what so ever that it would be the last day before my life changed forever.
The next day we went for the growth scan and it was one of those scans that no one wants to happen. The room went quiet. You ask questions like “is the baby ok?” And hear responses like “I don’t know”. The sonographer didn’t give me many answers but seemed keen that I go back to see the obstetrician right away with the ultrasound report. Things were written in it like “abnormal dopplers”, “prominent stomach and prominent gallbladder (?!)”, “femur length now below 5th centile”. Medical words I didn’t understand but knew were probably not ok.
I went back to see the obstetrician. She looked over the ultrasound report, she asked why I hadn’t had screening, she said she wanted me to go to the fetal medicine centre in Harley street the very next day and that she wanted to see me afterwards. It didn’t matter what time it was, she would see me. I asked “is there something wrong with the baby?”. She said “I don’t know”.
My husband was miffed that night when I told him what had happened and I thought he should come with me to the scan the next day. He said the obstetrician didn’t sound like she knew what she was talking about and had got me all worked up over nothing. But he wasn’t there and it’s hard to explain the tone in the room when things like that happen. It just changes. No one wants to tell the 34 week pregnant woman the news that was coming.
The next day we had the great honour of being scanned by Professor Nicolaides – I am sure you will know of him. He is an interesting character. Not much of a bedside manner, but still I found him kind. He delivered the news bluntly, without sugar coating. The scan of the babies abdomen showed a classic double bubble which was indicative of duodenal atresia (which meant his stomach was not connected to his bowel) and that one out of three babies with this congenital defect have Down’s syndrome. He told us that the baby also had a hypoplastic nasal bone and short femurs. Given this he thought it higher than a 50% chance the baby would have Down’s syndrome. Why did we not have screening? What did we want to do next? We had three options;
1) He could do amniocentesis right there and then. There was a high chance I could go into labour, but we’d know definitively within 3 days.
2) We could have the harmony test, just a blood test. I’d get the results in 10 days and it was not diagnostic but highly accurate.
3) we could wait and find out at the birth.
I couldn’t speak. All that came out of my mouth was a wail. Professor nicolaides touched my shoulder and gave me a kind smile. He suggested taking the harmony test, as waiting until the birth “would be too agonising”. My husband gave consent. That’s what we did. That entire exchange took place in less than 5 minutes. All of that, in less than 5 minutes.
We went back to the hospital to see the obstetrician. We didn’t actually make it into the reception. A kind midwife found me broken down crying and clinging to my husband in front of a lift bank. She ushered us into a room and said she would fetch the obstetrician. I never found out her name, but I will always be grateful to her for putting her arm around me then.
When the obstetrician came, things were explained. It was likely the baby would have Down’s syndrome, what did we want to do next? “Well we’re having the harmony test”. No that is not what she meant. She meant did we still want to have the baby. I paused for a second just trying to comprehend what she was asking me. Then I understood. What did most people do? Most people choose not to have the baby, but most people do not find out as late as we did. Just then the baby kicked and I told her, that’s not an option. My husbands hand in mine was all I needed to know he felt the same way. “Parents are committed to the pregnancy” was written in my handheld notes. Ok so we are having this baby, which confusingly I really didn’t want to have but also couldn’t not have. I wanted to go back to yesterday, to the baby I was having yesterday, the baby without Down’s syndrome I had pictured in my head.
Next the semantics. The baby would need surgery within the days after birth so he could drink milk. She would arrange for us to meet the surgical team and tour the NICU. He would be in for a lengthy stay at hospital. I wouldn’t get those precious newborn cuddles when he was born. I wouldn’t be bringing him home with me when I was discharged. His dopplers were abnormal, there was a very high chance of intrauterine death. I would need daily monitoring and twice weekly growth scans until he arrived and that he was unlikely to reach term. Did we understand what she was saying?
I was so scared. It was the most scared I have ever been in my life. I honestly didn’t know how to continue. I loved this baby. I wanted this baby. I didn’t want a baby with Down’s syndrome. Why me? Was this some sort of divine joke, calling my bluff because I declined screening? Would I have chosen not have this baby if I’d known sooner? Would my life ever be normal again? Would I be able to ever go back to work? Should we still call him the name we’d picked out or were we wasting that now on a child who wasn’t the child we expected? Would I love him? Was I unfairly burdening my eldest? I thought of my eldest and how excited he was to be a big brother and how much talks about baby in mummy’s tummy. We’d read books together about it, we’d prepared. I thought I was giving him a playmate, not a sibling with a disability. But I knew deep down that no baby was the worst outcome in my mind so I would just have to find a way through it.
I staged it all out in my head. The plan now was just to try and keep the baby inside me for as long as I could, to make him as strong as I could for surgery. I showed up every day at the hospital to get hooked up to the CTG monitor, to have my growth scans, to get my steroid jabs. I just kept putting one foot in front of another, just trying to keep my head above water.
The harmony test results came in, there was a 99.9% chance the baby would have Down’s syndrome. They were irrelevant by that stage to me. Not to everyone else. Many other people seemed to think this might be the confirmation we needed to take the path most people take. The manager from the fetal medicine centre called me to tell me “it’s bad news I’m afraid” and asked me what I wanted to do next, did I need to speak to someone about the option of not continuing the pregnancy. At my next growth scan I was asked again did I want to continue the pregnancy. That’s three times I was asked did I want to abort my baby in the third trimester. Three times I said no.
It was not all talk of medical problems and abortions. I will never forget the words my obstetrician (who was back from holiday at this point) said to me when he got my harmony test results; “I have some news for you, you’re going to have a very special little boy. I don’t know how much this will mean to you, but I would have made the same decisions as you.” Those words meant the world.
We made it to 36 weeks and 3 days. Then the way the baby moved changed. He didn’t stop moving, or move less. He just moved differently, he felt weaker. I went into hospital twice within 12 hours. Both times the CTG looked fine, however a growth scan showed the dopplers had deteriorated. He was coming today. I hadn’t even packed a hospital bag.
His birth, as it happened, was an amazing experience. I had a c section. I walked up to the operating room, my husband was very excited that it overlooked Stamford bridge. I overheard my obstetrician tell his colleague “I’m really looking forward to meeting this little man.” The first thing Aidan did when he was born was projectile pee everywhere so the room was full of laughter. My husband cut the cord. The NICU team checked him over and aspirated the contents of his stomach, I got a quick cuddle and then he was wheeled off to the NICU. I was sewed up and the team of doctors and midwives I had grown to know so well, all hugged and congratulated me. My husband sent me photos of Aidan so I could show everyone the beautiful little thing we had made and brought into the world safely.
Aidan is now home from hospital, after a month long stay, and thriving. He is not without his challenges, but also he brings so much joy. I have seen a world of kindness and a depth of love that I hadn’t known before he arrived. I have seen how people will rally around you when you need it; how it takes a village to raise a child; the wonders of the NHS; how magnificently empathetic and brave my eldest boy is – just to name a few. Aidan is only 12 weeks old and already he has changed my family so profoundly, and for the better. I wish I hadn’t been so scared. I wish I still wasn’t so scared sometimes, but we’re just a normal family of four that happens to have some extra genetic material knocking about. He’s just a lovely little baby and not so different after all.