I Was Born With a Heart Defect That Could've Killed Me by Age 4. I'm 25
Emily Straley, of New Jersey, was born with a heart defect that has required dozens of procedures. Here's how she stays positive in the face of more major surgery in her future.
Doctors discovered that I have a heart defect called Tetralogy of Fallot when I was just 4 days old, and that quickly became the center of my very young life.
Tetralogy of Fallot involves four defects of the heart, and it caused my skin to turn bluish because I didn’t have enough oxygen in my blood. As soon as doctors made this discovery, I was transported to a children’s hospital for my first of many cardiac catheterizations over the years. I wasn’t allowed to cry for my first full year because I would turn blue. It was really hard for my parents.
Three months later, I had my first open-heart surgery. I had a procedure about every five to six years to see if everything is working properly and to gauge how long it will be until I need a second major surgery. Depending on how technology and research progress, I may need one more open-heart surgery to replace my aortic valve. Currently, I have 12 pieces of metal in my heart, such as clips, coils, and stents, to keep my heart functioning properly.
Every year, along with my annual physical with my primary care doctor, I have a heart checkup that involves an EKG and an echocardiogram. Sometimes I need a stress test or a CT scan.
You can’t tell anything is wrong with my heart by looking at me. I looked like a normal, healthy kid growing up, but on the inside, I have this heart condition going on. That made growing up different for me than it was for my friends. I wasn’t allowed to play contact sports. I was bullied for being in modified gym class and not being able to keep up with some of the more athletic students. Kids never really understood what I was going through.
I used dance as an outlet. Dance has been a part of my life since I was 3 years old, and it has allowed me to be more confident, meet new friends, and give me the exercise I needed in a way my heart could handle.
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Although my friends couldn’t truly understand what I was dealing with, most of them have been supportive and are there for me. I don’t have many limitations now. I go on roller coasters, I do as many hikes as I can, and I swim in pools and the ocean.
It will probably be 10 to 15 years before my next major surgery. I try to eat healthy and get as much exercise as I can so that when it comes time for my next procedure, I’m ready to face it head-on. I work at Macy’s—that helps me get my 10,000 daily steps.
I try not to think about still needing more surgery and live my life doing as much as I can. I have the best support team—girlfriends I’ve met through advocacy with the American Heart Association (like walking in the Red Dress Collection fashion show this year), other close friends, and love and support from my parents. I also listen to music to stay upbeat.
The catheterizations have never been my favorite thing, but now that they are routinely done, I know what to expect and always think of the positive outcome. If it wasn’t for advancements in technology and my doctors, I wouldn’t have survived. If this defect isn't corrected, it can be life-threatening. Doctors always told me that without surgery, I would have died between ages 2 and 4.
I always tell women that if something doesn’t feel right, go see the doctor, just go get it checked out. After I did an event to raise heart health awareness, a family friend actually went to the doctor—and she found out she had a heart problem. Encouraging awareness is more important than anything.
I may look healthy, but you never know what someone is going through, whether it’s something minor or severe.
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