Adult Congenital Heart Defect Survivor
My story is one of a congenital heart defect survivor. I was born with aortic stenosis along with cleft lip and cleft palate. After I was born, a heart irregularity was discovered. However, it was not until I was 2 months old when I had a heart catheterization, that the severe aortic stenosis was diagnosed. Two years later, I underwent my first open heart procedure with an aortic valvulotomy. Doctors told my parents to expect the procedure to prolong my life 2-6 years.
Throughout my childhood, I never understood the seriousness of my heart condition. I was involved in dance and competitive gymnastics, attended school with honors, and enjoyed life as a “normal” kid in between surgeries to repair my cleft. Yearly cardiology appointments with echocardiograms monitored the valve.
In fifth grade, I was diagnosed with endocarditis. Treatment consisted of intravenous antibiotics for two weeks in the hospital, then four weeks at home. Since that time, pre-antibiotic therapy is required before all dental procedures and any invasive procedures.
The summer prior to ninth grade, during a routine cardiology appointment, the cardiologist recommended surgery. In July, the second aortic valve repair was performed. No problems until the last year of nursing school, I became tired easily and fainted. A visit to the cardiologist revealed the aortic valve was severely stenosed and leaky, and the mitral valve was also beginning to leak. The surgeon recommended a valve replacement immediately with either a porcine or cadaver. Their goal was to replace the valve with a cadaver, if one was available the correct size, so I may have kids in the future. December 2001 I underwent a replacement of the aortic valve with a cadaver valve.
I completed my BSN the following semester in May, married in June, and began my nursing career on an adult cardiovascular telemetry unit. I am curerntly a pediatric nurse within the schools. I also publish a local website, Macaroni Kid Monroe-West Monroe. Yearly cardiology and echo appointments are still required; however, no changes in the aortic valve function and appearance! I have two children, ages 12 and 8, neither have medical problems. The future of my heart’s medical needs are unknown; however, is very promising with American Heart Association providing research, treatment, and support. The gift of my family’s and friends’ lifetime of support is the foundation of my success as a congenital heart defect survivor.
