Tuesday, October 24, 2006

Our heart story involves our entire family. I have a son, two sisters, and very likely a deceased aunt that have all been diagnosed with Tetralogy of Fallot. I also have a 1-year old nephew who was born with a patent ductus arteriosus.

My son, Killian, is 2 years old and has already been through two open-heart surgeries, 5 cardiac catheterizations and has another surgery planned this summer; he will likely have additional surgeries and catheterizations in the future. Killian was diagnosed at 20 weeks gestation, at which point we researched every hospital in the nation to decide where to have him treated. We discovered that our local hospital, which at that time was Vanderbilt University Medical Center, was a top notch children's hospital, and he has had all of his procedures done there. Killian has never gone for more than 6 months without having a cardiac procedure. Despite his constant procedures, he is an otherwise happy and very-healthy looking child. He has not yet developed a fear of doctors or hospitals; he actually enjoys the hospital because when he is there he gets whatever he asks for, usually movies, donuts, and ice-cream.

Two of my parent's seven children were also born with Tetralogy of Fallot as well. These are my two sisters, who arc now 46 and 44 years old. Both have had complete repair and now have children of their own, none of whom have heart defects.

The older of the two sisters, Anne, was diagnosed when the doctor realized she had blue spells and a heart murmur. Her condition is similar to my son's; both of them have smaller arteries that have been difficult to repair. She had a shunt installed at age 3. During her next surgery at age 8, the doctor's came out of the operating room to tell my parents that it was too risky at that time to undo the shunt and patch the hole because of the narrow pulmonary artery. She was born at the time when doctors were just learning how to fix this defect. Later, she had a complete repair when she was 15; two years ago she had an additional surgery to fix a leaky patch, widen her pulmonary artery and install a new pulmonary valve.

The younger of the two sisters, Julie, was diagnosed very early in her life and had a complete repair when she was 3. She has never had any negative effects or required additional surgery. She continues to visit her pediatric cardiologist repeatedly with no problems.

After Killian was born, my family did some detective work and discovered that I had an aunt who died when she was 3 weeks old. We do not know the exact cause of the death, but the medical records state that she was a "blue baby", which signals a heart defect.

Just last year, we had another heart defect in our family. My brother's son, Gavin, was diagnosed with a patent ductus arteriosus. He was told to wait six months to see if the patent ductus arteriosus closed on its own. Luckily, it did close on its own and Gavin has had no other cardiac difficulties

Given the large family history of heart defects in my family, we have spoken with many doctors about enrolling our family in a genetic study. We have talked with doctors at Vanderbilt Children's Hospital and they arc in the process of setting up such a study. Our family would love to find out if there is some gene that we carry that is causing these heart defects. It would be helpful for my son, my nieces and nephews, and all their future children if we were able to find the gene and precise mutation. Given the high rate of heart defects in my family, my wife and I have decided to postpone having additional children until we know more about my family's medical history. Although we do not regret having Killian, we do not know whether we have the strength to face the risk of having a second child with a heart defect. We have chosen to pursue adoption, but even that option is difficult to pursue because we still are uncertain what lies ahead for Killian.

Killian still has very small pulmonary arteries and will have a conduit valve inserted to replace his left artery, and further work to enlarge his right artery in a surgical procedure this summer at Riley Children's Hospital in Indianapolis, Indiana. We have two children's hospitals collaborating on his medical care because although we now live in Indianapolis, we continue to travel back to Nashville for his catheterizations. We hope to someday reach a point where Killian does not have to have a cardiac procedure every six months. Although it has not been an easy road, having a child with a heart defect has taught us many things about ourselves, and about our inner strength, and shown us how lucky we are to have such supportive and helpful family and friends.

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