I knew Alex was going to have health issues when I had my first ultrasound, 10 weeks into gestation. He had, I was told, fluid around his heart and at the back of his neck. Down Syndrome was ruled out a few weeks later via amniocentesis. It wasn’t until he was born and transferred to the nearby Children’s Hospital of Eastern Ontario that he was diagnosed with the second most prevalent syndrome: Noonan Syndrome. To the geneticist it was obvious at first glance. Barrel-chested; low-set ears; thickness in the neck; and widely spaced, bright blue eyes. It was all there, on top of the multiple heart issues.
His prognosis was bad. Without surgery, his cardiologist told us his heart could no longer pump oxygen through his bloodstream. He would die within a year. The surgery itself came with a 50/50 chance of survival. It was a tough decision, yet an obvious choice. Just short of two months of age, he went to the operating room. About half-way through the procedure, the surgeon came in to let us know that Alex’s heart had stopped and he had lost all vital signs. They got him back after a few minutes by providing open-heart massage, but the surgeon said he would not resuscitate him again. It was time to close the suture and hope for the best. A couple of hours later we were told our little boy had survived.
The reason I go through this history when I’m here to talk about his deafness is, first, to explain why I reacted the way I did when I found out he couldn’t hear, and second, why he can’t hear. He was about four months old when I began to realize he wasn’t responding to noises. Since he was still in the hospital (he didn’t come home until he was eight months old), I had him tested right away. When the test proved he was profoundly deaf, I felt sad that he couldn’t hear me sing to him, and that he would never be quite like the rest of us, but hey – he was alive. Years later, I’m still realizing the impact of his difference in abilities, as you’ll see as the month goes on. Noonan Syndrome doesn’t include deafness as one of its genetic anomalies. The doctors told me it was likely the lapse in vital signs during the surgery which injured his brain. I had to wait to find out if he would have any other symptoms – as it turns out, I’ll probably never know.
It’s been a roller coaster of ups and downs, with oh so many laughs and challenges and opportunities to learn along the way. I hope you’ll enjoy reading about the ride.
Just before Alex finally came home (if I remember correctly, the weekend of the CHEO telethon in 2001 was his last weekend at the hospital) they filmed some of the inpatients to show at the end of the news. The baby at the end (2:24) is Alex.