he’s Henry first.

With the initial processing of the diagnosis done and dusted, it was great to just be pregnant and not be in a state of such anguish and despair. It’s funny, I spent the whole first trimester being so afraid of a miscarriage and yet, as soon as we found out about Henry’s diagnosis I knew that just was not going to happen. I don’t know how, but I just knew he was a resilient little dude and boy was I right. Even during our amniocentesis the sac surrounding the baby is usually quite tough but the Dr mentioned that Henry’s sac was the toughest she has ever experienced (that was not fun for me – thanks, buddy!).
Henry kept proving his strength and resilience throughout the remainder of the pregnancy – first, I was not supposed to feel movement until late due to my anterior placenta and yet I felt him from 15 weeks and the whole time he was a wriggly worm! Everything was going well and then at our 20 week anatomy scan, the doctor confirmed that Henry had a hole in his heart, and a not so good type – an AVSD, which pretty much always requires open heart surgery in the first few months of life. This is common in babies with DS, with close to 50% having some form of heart problem. Interestingly, the hardest part of this news for us was learning that we may have to deliver in Sydney, away from home. The idea of that just seemed so farfetched and I remember the doctor saying “you just move there a few weeks before your due date”…. sure, like it’s that easy?! I didn’t like the idea of my baby needing surgery, but honestly it seemed like we were just ready to accept whatever the universe threw at us and were ready to do what we needed to help him.

But they were wrong. We drove all the way to Sydney after work for a specialist appointment in which five minutes in, the lead in the field said there’s no AVSD. We were full of shock as we had not been told it was a possibility, we had been told it was confirmed and I still don’t know how they got it so wrong. Anyway, little man overcame that obstacle and it turns out there was a tiny 1mm hole in his heart but the specialist said it would close before birth, and it did.

We were also told that Henry would become growth restricted and was at risk of pre-term delivery. All of a sudden I was chasing a new ‘safe zone’ – viability milestones. I now know that the only safe zone is when they are here safely, and even then it feels like we still aren’t there – maybe it is imaginary. Henry kept ticking every box – 24 weeks, milestone number one achieved. Third trimester, milestone two achieved. Full-term, milestone three achieved. Tick, tick, tick. This kid is so resilient. But perhaps the most impressive is the assumptions he has proved wrong since he made his way earthside.

We met with a neonatologist before Henry was born as they wanted to talk through any potential complications and the sorts of tests they like to do for babies with Down Syndrome in hospital. There were a lot of assumptions made in this conversation; not too many “it is possible that he may X”, it was often “babies with Down Syndrome this and that”. Henry was supposed to be floppy, he was supposed to not cry, he was likely to require oxygen support, would probably need to go to the special care nursery. Wrong, wrong, wrong. Henry made his way earthside at 21:21 (which I thought was cool considering his extra 21st chromosome) on the 20th October 2019 (would have been extra cool if it was also the 21st, but I’ll take it)…. he was born crying a beautiful cry in between hiccups, not floppy at all, with perfect apgar scores and required no special nursery visits. He was perfect, and he was ours.

Henry was supposed to have trouble feeding and have low muscle tone and yet his sucking reflex was so strong that we needed to get him a slow releasing teat so that it didn’t spill everywhere… he does have low muscle tone, but not too different from a neurotypical baby and had great neck strength from day dot. He rolled over at five weeks old, and if sitting on our lap pretty much kicks himself off his legs are so strong. Yet, whenever we’ve had an appointment with a MACH nurse or midwife and bring up any questions or concerns, they start going on about all these explanations based on his Down Syndrome without even ASKING what he is like, as a person. They talk about his low muscle tone and weak sucking reflex, and his potential heart problems… when they actually look at him they realise that these things are not true for Henry and provide other suggestions and explanations.

This is so frustrating as a parent. For your child to be put in a box that is supposed to define him and his every behaviour – that’s not fair, is it? Of course, some children with Down Syndrome have some of these difficulties so I can understand why they come to mind, but what ever happened to asking? to getting to know my child free of assumption?

Luckily we have surrounded ourselves with amazing health professionals that will be part of Henry’s ongoing medical team. Our paediatrician is fantastic. We met with her for the first time when Henry was 3 weeks old and one of my questions (of a long list) was is there anything we should be doing before he starts his therapies. Her response absolutely resonated with me and shook me to my core. She said that people and health professionals are going to medicalise Henry for the rest of his life… so our job is to get to know him… build a relationship with him and learn as much as you can about him and remember, above all else…….

he’s Henry first.

photo credit: Stephanie Rodden Photography