Learning I Had Congenital Heart Disease

February 6, 2015 9:03 PM

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Learning I Had Congenital Heart Disease

It was the spring of 1981, I was 3 weeks old and my 27-year-old mother brought me in for a well-baby check up. After listening to my outrageously loud heart beat the doctor told her, "I don't think your baby's heart has formed properly." He then took me away from her for hours of tests and shortly discovered that I had a Ventricular Septal Defect (VSD). In layman's terms, I have a hole in my heart, a condition that many Americans are born with. I have to be monitored throughout my entire lifetime and find doctors who intimately understand my case for possibly over 90 years (I expect to have a long life). The likelihood that my doctors retire or kick the bucket before I do is pretty strong. In fact, it's already happened. My transition from my beloved pediatric cardiologist to my series of adult cardiologists has been a 15-year struggle causing panic, frustration and a whole heck of a lot of confusion.

In 1981, doctors didn't really understand the extent of my problem. In fact, to this day they are still learning about it. Back then, doctors would have had to cut open my chest and crack open my rib cage to get to my heart. As a newborn, doctors felt that surgery would have been more fatal than liv...

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