When the doctor offered the integrated prenatal screening during one of my first prenatal appointments, my husband and I agreed to it, I think we even replied with the cliché response of wanting to know in order to help us prepare if we needed to. Being young and healthy we assumed we wouldn’t need to worry ourselves about that, based on my age the chances of having a child with Down syndrome were 1 in 769. I did the blood work and ultrasound, and like many other pregnant ladies, promptly forgot all about it.
Fast forward a few months, and we get the message that my blood work has been flagged as high risk, but still it’s only 1 in 55, that’s less than a 2% chance. As scary as it sounded we were still optimistic everything would come back clear.
Another month passes, and that optimism disappears with one phone call confirming that our baby has tested positive for Trisomy 21, more commonly known as Down syndrome. These were the results of the Non-invasive prenatal testing (NIPT) which were to have an accuracy of ~99%.
We were shocked.
We were sad.
We were mad.
It wasn’t fair.
Why our baby?
There were tears and fears and lots of Google searches (which contributed to more tears and fears) but our love for this little being never faltered. We worried about his health – heart conditions, certain types of cancer, hearing impairment, the list of potential health issues just kept growing. We worried about the future – would he make friends? Would he be accepted? Would people tease him? Would he live with us forever? Fear of the unknown was so difficult.
My pregnancy was instantly deemed high risk so my prenatal care was transferred to a larger hospital. Weekly appointments to monitor the baby, meetings with genetic counselors, cardiologists and the NICU team, left me feeling both relieved that things seemed to be going well but also anxious knowing that things could change quickly, requiring this frequent monitoring.
The entire experience before my son was born was rather surreal… Is this really going to be my life? I didn’t do an amniocentesis so maybe the NIPT test was wrong? It was rare but had happened, so maybe?!
I would read parents stories about how once you have your baby in your arms, everything will feel right, everything will be okay. You are having a baby, things are not that much different. Honestly, I read those type of comments and thought ‘yeah right, it is all sunshine and rainbows.’
…But then he was born and everything was okay. Our little boy was here and he was perfect, extra chromosome and all. I found myself thinking and saying all those cliché comments I had doubted just weeks earlier.
We recognized how truly lucky we were (and continue to be) that our son was born without any major medical issues. We have been supported by an amazing team of medical and developmental specialists who have ensured that he continues to grow and learn. We have been lucky enough to participate in a few school visits to raise awareness and acceptance of differences and inclusion.
Everywhere we go he is loved.
Adults and children alike want to hear about his story and ask questions. They want to know about him.
And I gladly share – from his favourite food to my hopes for his future. I like to do this so people see that Down syndrome is such a small part of who he is. He loves to knock down block towers. He is funny and loves to laugh. He is a cuddle bug. He can be shy. He loves Elmo. He loves Cheerios and yogurt. He is everything a one year old boy is, and he also has Down syndrome.
There was a time when I thought that having a child with special needs would be a challenge. That it would require a strength I wasn’t sure if I possessed. There is a misconception that parents of children with special needs must be some sort of saints. And while yes, I like to consider myself amazing at everything I do, the truth is I’m just a first time mom figuring it out and trying to do best for my son.
Sometimes our life is a bit busier than that of a typical family – we have a few more appointments than others and some development milestones may take longer for my son to achieve but it is all worth it when you see the look of determination he gets when practicing a new skill or the immense pride we feel when he masters one of his goals.
Having a child is an amazing, tiring, sometimes scary experience. Having a child with Down syndrome is no different. We all want the best for our children. We all want them to grow up in a safe and loving community. We want them to laugh and have fun with friends. We want to protect them from mean words and cruel actions. We want our children to find their place in the world.
To love and be loved.
To find acceptance.
We want all the same things for our son so while we wouldn’t change our son for the world, with help we can change the world for him.
Written by: Miranda, Colin & Logan Graham