Why I Wish More Kids Had An Ugly Scar Like Mine

February 7-14 is Congenital Heart Defect Awareness Week

Soon after I started 10th grade, I made an appointment with a new doctor for my sports physical so I would be ready for JV volleyball tryouts. I played a variety of sports growing up and knew the drill of what a routine physical would be, but this one went very different than any other. My doctor took his stethoscope off, looked at me curiously, and asked, "Huh. Has anyone ever told you that you have a heart murmur before?"

No, they hadn't. 

I didn't even know what a heart murmur was but was instantly paralyzed with fear. Would I have to stop playing volleyball? Was I going to die? I was reassured that a heart murmur is just extra noise that can be heard in addition to the "lub-dub" sound of a beating heart. Sometime's it's nothing, and sometimes it's something.

Just to get a better idea of what was going on, I was referred to a cardiologist. After an echocardiogram to get an inside look at my heart, I was diagnosed with an atrial septal defect, a condition I'd had since birth but which had somehow gone undiagnosed for 16 years.

During fetal development, there is a natural opening between the two atria of the heart to allow blood to bypass the lungs, as it isn't needed. Soon after birth when the lungs are in use, tissue forms over the hole, sealing off the two sides with a septum and allowing blood to pump normally. 

For 1 in 1,500 births, however, this process either doesn't happen or doesn't happen completely. 

Because of the hole, oxygen-rich blood that should be pumped out to the body spills back on the side of oxygen-poor blood, bringing it back to the lungs. This causes the heart to work harder than it has to, eventually causing stroke, irregular heartbeat, and even heart failure.

"There are two options," the doctors told me. "One, you can have open heart surgery to repair the hole. Two, we don't do the surgery, and your heart will eventually give out and you'll die." 

So with really only the one option, the surgery was scheduled to patch what was described as a medium-large hole in my heart. 

Because I wasn't 18, my procedure was at a children's hospital. I sat on exam tables that were shaped like rocket ships or hippos, which did succeed in giving me something to laugh about instead of worrying about what was to come.

Once I was put under for the 6-hour-long procedure, my sternum was sawed open, my heart was stopped, and a heart-lung machine was used to keep me alive. A patch of tissue was stitched over the hole, "just like an innertube," they said. I awoke in the ICU with a 6-inch-long incision, plus two painful chest tubes to drain out any fluid. All of the other children on the floor that had gone through the same procedure that I had were no older than 6.

I stayed in the hospital for the rest of the week, with a steady drip of morphine to numb the blinding pain and a Nintendo 64 that had been wheeled into my room. While most teenagers get in trouble for getting high and playing video games, my experience was doctor-ordered and covered by insurance. Not a bad way to spend Christmas break, actually.

The scar on my chest did fade quite a bit, though its presence is still obvious 14 years later. I used to be extremely self-conscious about it, but now I see it as a great reminder of how amazing modern medicine actually is. Thanks to a doctor's keen ear with that heart murmur, I was able to have a congenital heart defect repaired, adding decades to my life expectancy.

Unfortunately, not every child that would benefit from a big, ugly scar like mine will receive it. 

Congenital heart defects are the most common birth defect, with over 30 different types. They occur in about 40,000 births in the U.S. each year and are among the leading causes of infant mortality in the country. 

While the rate of incidence holds fairly steadily around the world, many other countries lack the resources to properly screen young children for these defects and perform the corrective surgery.

There isn't a clear cause of what goes wrong during development to cause all of these defects, though genetics likely play a role. 

In order to support Congenital Heart Defect Awareness Week, help build awareness by sharing stories like mine, using #CHDaware in social media, and sending donations to organizations that assist patients and families and help fund research that seeks innovative new ways to treat and, hopefully one day, prevent these heart defects from happening.

Cover image: Shutterstock