So here we are in 2020. If 2019 was a year of survival, 2020 so far seems to be a year of reflection. Following Aidan’s stint in hospital with heart failure and surgery to close his PDA, life has settled into our new, old routine. We are all at home, Aidan is growing, learning and developing. Tom is back at nursery and starting to learn his ABC’s. He can now also count to 20. Simon is at work, and I am still on maternity leave keeping the house running. With the adrenaline of hospital wearing off, we’re adapting to not being in survival mode rather well. We’re enjoying being a family of four again. But at this slower pace, I have found myself reflecting and reliving moments of the year passed.
2019 was by no means a perfect year. I would go so far as to say it was the toughest year of my life. I started the year vomiting (hyperemesis gravidarum is not for the faint of heart). We went through a late pre-natal diagnosis of Down’s Syndrome for our much anticipated and wanted second child. We spent 12 weeks in hospital every day. Co-ordinating the mundane (household chores, grocery shopping, nursery pick ups and drop offs) with the exceptional. Our family made it through three operations, heart failure, sepsis and bronchiolitis. Would I change anything? Well you might expect me to say “no, Aidan is worth it” or perhaps you’d expect me to say “yes, I’d change it all!”. The answer is neither. I would change one thing. I would change the pre-natal diagnosis. Or specifically, the way we were told.
I feel guilty that the weeks and months before and after Aidan’s birth were spent feeling regretful. Regretful that he had Down’s Syndrome. For a while, I wish he didn’t have Down’s Syndrome. Then that faded and I just wished I didn’t know. Then I realized, I only wished I didn’t know because the label was the only thing tainting my experience of him. He has some medical issues, but for the most part, I spend my days enjoying him just as much as my eldest – if not a little bit more because as he’s my second, I understand how fleeting this time is.
So how do I wish I was told? How about this.
Congratulations! Your baby is growing really well and looks great. Won’t be long until you meet this little one. We wanted to let you know that it is possible your baby has Down’s Syndrome. This means that he has an extra copy of chromosome 21 which means he might develop a little differently from another child without that extra copy. We can’t predict the future for any child, and all children develop differently, so really we can’t tell you what exactly this means for his future.
We know that there is an increased chance of certain medical issues, such as bowel blockages or heart defects, but try not to worry too much. The chances are any issues he might face will be treatable and so there is no reason at this stage for us to suspect he will live anything other than a healthy life. Whilst we’re on the topic, this extra chromosome does mean he will be less likely to have solid organ tumors, atherosclerotic disease, hypertension, strokes or dental caries later in life.
Children with Down’s Syndrome also have a different learning profile to those who don’t have that extra chromosome. Again, all children learn differently and have their own individual strengths and weaknesses so don’t try to predict his future attainment before he’s even born.
We know this is a lot of information to take in in one day, and you might have some thoughts about what this might mean for you so why don’t you take these leaflets for the Down’s Syndrome Association and Positive About Down Syndrome. These are really amazing charities you should reach out to if you do have any questions or concerns.
I know it’s probably a bit of a fools errand re-writing history. It won’t change how we found out. But maybe one day, a new or expectant parent might come across this and they will hear the message they should have done all along.