Community Health Charities of Florida - February 2011

My name is Steven Larson and I was born with congenital heart defects. I am 11 years old and in the 5th grade. I was full-term when I was born, but I was born with two heart defects. The first one was a defect called total anomalous pulmonary venous return. They told my parents that my blood wasn't oxygenating my body, so I would need open heart surgery to correct the problem.

I was 2 days old when I had my first surgery. They told my parents I would only need one surgery and I would be done. I saw my cardiologist once a month. When I was 6 months old, my parents were told that I needed another surgery. I actually had another defect. My parents were told I had pulmonary vein stenosis. They had to go in and repair my veins so blood could flow through. My parents were devastated.

The cardiologists and the heart surgeon were very surprised. I have survived five open heart surgeries. I had surgery every 6 months until I was 3 years old. My case was discussed every Tuesday at the round table at the hospital. They put me on oxygen after my second surgery. Then I wasn't eating or thriving, so I was also tube-fed for 3 years. I had numerous hospital stays in between all my surgeries. If I just got a cold, I was hospitalized.

When I was 3 years old, my heart wasn't doing well again. My cardiologist did not want me to go through another surgery. So she sent my file out to different hospitals for other options. We ended up at Boston Children Hospital where they did a procedure on me through a cardiac catheter. I am from Chicago and went to Boston three times for this procedure. We drove to Boston because my cardiologist was uneasy about me flying.

They also told my parents that I might be behind in school and that I could not play any sports. I am now 11 years old and doing remarkably well. I am a straight A student in school and I love to play golf. I have come a long way. I still see my cardiologist once a year. She has now moved to the Mayo Clinic in Minnesota. I will need another surgery when I get to my teenage years. I have been through a lot in my little life and so have my parents. But they are so grateful to have me. I am truly a gift from God. I love life and truly enjoy it. If I could help any family going through a difficult time I would tell them to read my story, have faith, and believe.