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By submitting your story and/or photo to ACHA, you are giving permission for your story and/or photo to be displayed on our website. The stories on this page are the property of the individual who has provided it. Stories may be edited for content. The experiences and opinions expressed are solely those of the individual, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied within these stories.

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Jan 22

Posted by: CaptainCardio
1/22/2013 1:41 PM  RssIcon

My story begins 22 years ago in March, 1990 in Augusta, GA where I was born to two loving and supportive parents. Soon after I was born (hours maybe) my parents were given the news that I had a serious heart condition known as Hypoplastic Left-Heart Syndrome (HLHS). They had never heard of it before and were told that it was very serious and that if I did not get a transplant or surgery, I would probably die. Because of their strong faith, my parents trusted that the Lord would allow me to live. I was put on the transplant list and was on it for only a few days before they were told they’d have to make the decision to go through with what was known back then as a very risky series of operations.

My parents decided to go through with the surgeries and so I was transported via ambulance from University Hospital in Augusta to Egleston Children’s Hospital in Atlanta (now known as Children's Healthcare of Atlanta). All three of my surgeries, the Norwood, the Glenn, and the Fontan were done by Dr. Kanter. After each surgery, I recovered much faster than all the medical professionals expected I would and I truly believe it is because of skilled medical doctors and nurses, but more importantly God’s grace on my life.

Understandably, I have had to limit myself to what kind of physical activity and how much physical activity I do. As a child, I played baseball (well, formally “T-ball). I would run the bases just like every other kid on the team. For the most part my life has been normal.

As a child, teenager and young adult I have dealt with many of the same things that most other kids my age have dealt with: school, homework blues, church youth group, camping trips, retreats, learning how to drive, etc. In fact, unless I had told my friends, most of them would not have known about my serious heart condition. I was and continue to be a fighter.

Today, almost 23 years later, I continue to do and feel well. Remarkably, I have not had to have any major operations. I have had a few heart caths through the years, but otherwise have remained healthy, while continuing to be followed by a pediatric cardiologist and now an adult congenital cardiologist. I am planning on graduating with a BA in Psychology from Bryan College, this coming May 2013. I love people and have a passion for sharing my story and hope to one day use my degree to help those who have faced the same or similar medical hardships I have had to face.

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