While looking for a “pre-computer crash” photo of my kiddo with CHD, I came across his pre- and post-op records. Phrases like no femoral pulse, severe-misshapen artery, critical status, brings me right back to those horrific first days of Nicholas’s life. Those are words and feelings that no parent should ever experience. As my kiddo ages, it becomes easier and easier to put aside those memories. But, it still remains just as important to own our story, our experience, and use it on behalf of those who can’t.
Here’s our story: “Are you sitting down? Your baby has a serious heart defect.” This phone call was supposed to be my mother, congratulating us as we brought our newborn baby home for the first time. Instead, it marked the beginning of a nightmare which resulted in 3 hospitals, a helicopter ride and heart surgery, all in the first 3 days of Nicholas’ life. Nicholas was born with a serious heart defect called critical coarctation of the aorta, a severe narrowing in his aorta cutting off blood flow to the lower half of his body.
There were no signs of the ticking time bomb during any of his newborn physical exams. A few unusual readings of a blood pressure screening prompted an echocardiogram. However, the results weren’t available until after we were discharged home with our seemingly healthy baby. The brief phone call with the pediatrician left us with many more questions than answers. We were instructed to bring Nicholas to the area children’s hospital immediately, bypass the registration desk and go straight to the ICU, our next indication that something was seriously wrong. Once there, the doctors tried to give Nicholas some medicine to buy him time. Instead, the medicine slowed his breathing and Nicholas was placed on a ventilator. The wires and tubes were almost unbearable. It would be two days before I could hold my baby again.
Further testing indicated that Nicholas needed surgery, as soon as possible. But, there wasn’t an available surgeon at the Children’s Hospital. So, his limp little body was placed in a transport incubator and he was flown to the major children’s heart center 90 miles away. We followed the flashing lights in the sky, our baby. A few hours later, we placed Nicholas in the hands of the surgeon, clinging to hope that we would see him again. At this point he looked more like a science experiment than an infant. The seconds, minutes and hours ticked past. Eventually, Nicholas was returned to us, his heart mended, his body already healing. Fortunately, the road to recovery was much smoother than the downhill spiral we had just experienced. In just a few short days, a mere 7 days old, we brought our hero home to join his two older siblings.
The first few years of Nick’s life were filled with caution, fear, anxiety, and consumed by doctors’ visits. This was compounded by the fact that there were always 2 other siblings in tow. The inside of my minivan was decorated with the hundreds of “good patient” stickers the three of them had collected. These stickers meant Nicholas had made it another day.
Truthfully, Nicholas is a poster child for successful surgery. He has done so well, that the doctors’ visits have tapered off to a bi-annual cardiology visit. He is able to participate in sports with soccer and swimming topping his list, although hip-hop dancing is his favorite. Most days, it’s easy to forget that he has a serious defect. And then in an instant it all comes rushing back, like when his routine blood pressure is “funky,” or a seemly normal echocardiogram reveals “something unusual.” I catch myself wondering what his future holds. Until recently, children with severe heart defects didn’t survive and there is a huge gap of information about growing up with heart defects. There are still more questions than answers: How? Why? What’s next? No one really knows. I do know, that I will do everything I can to make sure he lives a long and healthy life.