A few hours after Charlie was born, he was diagnosed with complex congenital heart disease. We were told that he would need three open heart surgeries for management of his single ventricle heart.
Charlie developed congestive heart failure about a week after he was born and struggled to gain weight for many months. The first surgery was when he was six weeks old. He was also on multiple medications and required feeding through a G-tube.
In his first ten months, he was hospitalized seven times, had two open heart surgeries, and countless other procedures, tests, and blood draws. Despite all this, we celebrated his first birthday amazed that he could say all the things he was supposed to say and do all of the things he was supposed to do.
He remained in good health until his third, and hopefully last, heart surgery shortly after his third birthday. After a tough couple of months, he emerged from this healthy and fully recovered. He continues to require daily medications and is somewhat limited in his exercise capacity, but he has remained healthy and out of the hospital since the last surgery.
Charlie is now a 5-1/2 year old kindergartener. He reads, plays, jumps, and shouts like the other children in his class. Although he has little memory of the many challenges he has faced, going to see the doctor is still traumatic and he is aware that the scar on his chest makes him different from other children.
Charlie has embraced the AHA Jump Rope For Heart activities in a way neither of us anticipated. He has taken his responsibilities as his school's Heart Ambassador very seriously and he has done a great job. He likes the idea of that he is trying to raise money to help other children. Most importantly to us, he has asked more about what makes him special and the AHA activities have helped him to develop a sense of pride that he endured challenges that other children did not have to go experience.
It goes without saying that we are both tremendously proud of our son. Most of the time, the parent teaches and the child learns. With Charlie, the roles are reversed. He is our hero.
Charlie's Mom & Dad