Tetralogy of Fallot with severe Pulmonary Arteries Stenosis. Try saying that five times fast. For most of you who do not know me, I am the proud owner of this particular critical congenital heart defect. In the United States, one percent of babies are born with a congenital heart defect, and 25 percent of those babies are born with critical conditions. Since I have surpassed the many timelines that doctors have given me over the years, I have acquired four open surgeries, over 20 cardiac procedures, and countless hospital visits in my nineteen years of life. I write this article, not to seek pity, but to come to terms with a huge part about me that I often opt out of telling people when they get to know me.
I was born on October 31, 1996. I had my first open heart surgery when I was only three days old. One nurse even told my parents that I wasn’t going to make it. Guess I showed her. When I was really young, surgeries and doctors became normal to me. I never really associated these things with being sick. I often heard adults use the words “special” or “miracle” when describing my situation. It was strange for me to think of myself as anything but a normal little girl, until I started going to school. I noticed that the other kids didn’t have large scars on their chests, and they weren’t restricted from participating in gym class, or had aids following them around all day constantly asking if they felt OK, but I did. As much as I tried to hide, I stuck out like a sore thumb and my fellow classmates were just as confused as me.
Not fully understanding my own situation, I often referred to my condition as a “hurt heart” because let’s face it, "Tetralogy of Fallot with Pulmonary Arteries Stenosis" isn’t exactly easy for a six-year-old to pronounce. My condition restricted me from running, jumping or any strenuous activity. You can see why this would irritate me as a child. I would be told to “slow down” or “stop to take a breath” whenever I was just having fun with my friends at recess. My confusion turned to frustration. The normalcy I had once been accustomed to had gone away and I became angry at the thought of being “different.”
As I grew older, I was given more and more opportunities. New medicines and procedures had restored me with more energy and more ability to be the normal girl I wanted to be. Now as an adult, I don’t look around at the people in my classes to see if they have scars like me, but rather be comfortable with my own scar. I have realized that I’m not the sore thumb that I used to think I was. Everyone has a story, a hardship, or even a scar. There are thousands of kids battling congenital heart diseases. There are thousands of people just battling something. That doesn’t make my situation any less, or any more important. It is still an obstacle that I have to deal with every day, but I am stronger because of it. I recently got a tattoo of a red ribbon to symbolize various heart diseases. Tattoos are really cool because you get to share with people the meaning behind them. For so long I neglected to tell people this huge part of me, and now I have the opportunity to finally tell my story and hope other kids can feel inspired to tell theirs too, no matter what battle they’re facing.
My story is just one of the many about kids who are living with congenital heart defects into their adulthood. For those who are battling heart defects, they are required many routine surgeries and medications. For many families, this can become very costly. For more information, to read other CHD stories, or to make a donation, visit here.
