Looking at the happy, active, vibrant 4-year-old now, you’d never guess the struggles that Seamus faced in the first few months of his life. In fact, even despite his challenges, he’s always been a very happy, awesome little boy. As first-time parents, we followed all of the guidelines for a healthy pregnancy, even opting for pre-natal screening to rule out any complications. Of course, whenever anyone does those tests, they do them as a matter of course, not expecting anything out of the ordinary. As we would learn, and Seamus would prove time and again, he is anything but ordinary.
A few more tests confirmed a diagnosis of Down syndrome, and although at first, we greeted this news with sadness and trepidation, now, we can’t imagine our little boy any differently and wouldn’t change a thing about him. One common complication that often comes with Down syndrome is a heart defect, and his detailed ultrasound a few weeks later confirmed what we were told was ‘a large VSD, a Ventricular Septal Defect, where the two lower chambers of the heart, the ventricles, had a large hole between them. This news was a devastating blow because it put the pregnancy, and the baby’s survival afterwards, in jeopardy.
My and the baby’s physical health remained strong throughout the pregnancy, which was a miraculous blessing, but my mental health struggled with fears for the baby’s survival and what his future would hold.
We opted not to learn the sex of the baby, so we’d have a surprise, and luckily, I was able to go to full term, which really helped the baby’s strength and improved his chances of survival. When they announced, “It’s a boy!” he followed with a strong cry, as if to say ‘Hey, I’m here, I’m strong, get ready world!’ We cried tears of joy at our strong, determined boy and hoped he would remain so forever.
The cardiac surgeons wouldn’t do the very serious open-heart surgery to repair his heart hole on a tiny infant unless he was critical, so they’d wait as long as they could, basically until he was in heart failure, to do so. The bigger he was, the stronger he’d be, and the more likely he’d survive the surgery.
Provided he could survive until that time, which was the most terrifying situation imaginable for a parent.
We were lucky to have only one short hospital admission for heart failure, but otherwise, very few complications led to his heart surgery. Then, just shy of five months old, we got the call for his surgery. We were terrified, but as Seamus had shown us repeatedly in his young life, we didn’t need to be. His surgery was a great success, and he was home in just five days!
The heart surgery changed him from a weak and tired baby to a healthy, active one. Follow-up appointments monitor his heart and ensure the patch over the hole remains intact. These appointments will be lifelong. So far, at four years old, it is still perfect, and we can only hope it will remain so forever.
Seamus (pronounced SHAY-mus) attended daycare with his peers until this spring, where he collected fans like some people collect baseball cards. He just entered JK and is impressing his teachers by knowing the alphabet, counting, and 100s of words in sign language. He loves people, has a great sense of humour, and is a very bright little boy. He is a joy to anyone he meets and is the biggest blessing in our lives.
We have not yet used our wish and look forward to doing so when Seamus gets a bit older and can participate in choosing something.
We are so incredibly grateful to the Guelph Wish Fund for bestowing this blessing on our family and for all the donors who help make these amazing wishes possible. Thank you from the bottom of our full (and repaired) hearts!
--Katrina and Tony