Will, born 1994

My son, William, was born on June 29, 1994. Will was born with a complex combination of heart defects, Tricuspid Atresia, Transposition of the Greater Arteries with Hypoplastic Aortic Arch, ASD and VSD. We knew at our first ultrasound that something was wrong with Will’s heart. Luckily, we do not live far from Boston, so we were immediately sent to Boston Children’s Hospital for our answers. Two days after Will was born, he had his shunt procedure. We took him home 13 days later, only to return after a few days due to an infection in the incision. He was in the hospital longer for the infection then for the surgery itself. After bringing him home the second time, we were very lucky.

 

No complications. In fact, he was doing so well his doctors wanted to try something groundbreaking with him. He was handling a low oxygen rate so well, his doctors wanted to put off his second surgery a couple of months and then do a combined Bi-directional Glenn and Fontan procedure at the same time, eliminating the need for that third surgery later in life. At the time, this had not been attempted on a child as young as Will. After many discussions with his team of doctors, we decided to go for it. Will had the combo surgery when he was nine months old. No complications again, except for another incision infection that was caught early. At nine months old, Will was completely finished with his major surgeries.

 

When he was born, we had started to call him Billy, after his father. After his first surgery, one of the nurses said to us, “you really should consider calling him Will, because this kid has the will to survive”. My husband and I looked at each other, and knew from that moment on he would be called Will.

 

Currently, he is in his senior year of high school and acting like a typical 17 year old boy.  Over the years, Will has continued to amaze us. Children’s Hospital has used him and his story in countless promotional campaigns. He has had two catheterizations since his surgeries, the latest being in 2000 to close a hole that had been put in a fenestration wall. We were once told that Will would never play contact sports, and probably no sports once he reached high school level. William has played football, baseball, hockey and golf. He also loves to fish. Currently, he is the goalie for his division I high school hockey team. Sports is a huge part of who he is, and we have allowed him to participate in anything he wants, with his doctor’s permission. Sky’s the limit, we do not want to hold him back. His doctor has encouraged Will’s physical activity, as it is good for his heart. Will is very thankful that he does not have too many limitations. Now that he is older he is learning to become aware of his limitations and listen to his body.

 

Remember to never give up and always believe.

 

Story by Will's mom, Amy - Massachusetts