Jan 24
tolmstead , Posted on SUPPORT NETWORK Blog

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.

1 Comment
  • andrewwwkent

    This is a very inspiring story. I’m in nursing school, and I'm writing a paper about various heart diseases and go to edubirdie to find the necessary information and help, and your story interested me. It’s great that you work in the healthcare sector and really understand the problems of people with similar diagnoses.

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