Shannon James shares her experiences as the mother of a child born with a congenital heart defect.
It was a July night eight and a half years ago, that my husband and I were thrust into the world of congenital heart disease. I had just given birth to our first born, a little boy named Jack. We spent those first few hours getting to know him and sharing him with family. As night approached my nurse (whom I now consider my angel nurse) persuaded us to send Jack to the nursery so we could rest. Within 15 minutes all chaos erupted in my room. All they could tell us was our beautiful baby boy was completely blue and they were doing everything they could to save his life.
At 11:15 on the night I gave birth, a pediatric cardiologist walked into my hospital room and told us that Jack was critically ill and would only survive if he had open heart surgery in the first week of his life. In that moment, it was as if the world stopped moving. The emotional pain I felt was beyond anything I had ever experienced before. How could I have gone nine months with this perfect little boy inside of me and have no idea how sick he truly was?
At just five days old we handed Jack over to his surgeon. It was the hardest day of my life. I spent most of the day praying, making deals with God about how I promised to live my life if he gave me my little boy back. Jack did amazingly well and was discharged from the hospital just eight days after his surgery. It wasn’t until Jack was in the hospital that I learned 1 in every 100 babies born have some form of heart disease.
Today Jack is a healthy eight-year-old. He plays premier soccer, travel baseball and gymnastics – in other words he’s always on the move. As Jack lay on the table at his cardiologist’s office last week having an echocardiogram, I was reminded how far my strong boy has come. After everything we have been through, I can honestly say I wouldn’t change it for the world. It brought us closer together as a family and allowed us to meet so many amazing families that share similar stories to ours. I’ve learned not to sweat the small stuff and try to live everyday as if it’s a gift. A few years ago, we had the privilege to be part of passing the Pulse Ox Law in New York State. I hope that we can continue to push forward in the world of research for congenital heart disease because 1 in 100 is just too high!