Kelsey Fox didn’t have the easiest life.
She was born with tetralogy of Fallot, a rare heart condition that required her to undergo four open-heart surgeries by age 14. She still wears her scars from surgery and drainage tube holes.
But when she saw TV host Jimmy Kimmel on national television earlier this week, tearfully sharing with his audience how his infant son William was diagnosed with the same condition, she understood what he was going through.
“My mom cries about it, even now. I’m 29, and she still gets teared up,” said Fox, a Philadelphia resident and college professor. “I completely understand why it was so scary to him.”
Tetralogy of Fallot (pronounced fuh-low) is a rare condition that causes insufficiently oxygenated blood to be pumped out of the heart. After Fox was born prematurely in the late '80s, she was blue and steadily losing weight, she said. After being diagnosed with the condition, she had her first heart surgery while 5 weeks old.
“It was really rough for my parents,” she said. “I had two more surgeries before I was 2.”
As a youngster, Fox knew her heart was “leaking,” had to work extra hard and had a murmur so loud doctors could hear it without a stethoscope. At one point, a pig’s heart valve was surgically implanted in her heart. That was replaced with a human valve during her last surgery at age 14.
I am thankful to love and be loved by these two brave guys. Both criers. pic.twitter.com/NL0C3K3Q4E— Molly McNearney (@mollymcnearney) May 2, 2017
Her condition didn’t stop her from playing sports, dancing and doing karate. But she grew accustomed to overanxious adults checking her activities.
“I really hated it as a kid. I was a tough girl, I didn’t like being babied,” Fox recalled. “My friends’ parents would hover around and say, ‘She doesn’t look good, she has to sit down,’ because I was starting to look pale. Mentally, I didn’t feel like I had anything to hold me back, but once in a while, I had to chill out.”
She also shied away from exposing her surgery scars in public. Scars from plastic tubes earned her the nickname "belly buttons" from one friend. But as an adult, Fox came to terms with the 9-inch scar down her chest and the ones on her back and side. After she posted a picture of herself to Imgur, it unexpectedly went viral online as the subject of stories about body positivity.
I know selfies aren't ok, but I am so proud that I finally felt confident enough to wear a bikini instead of hiding my scar.
For Kimmel’s newborn son William, she has an idea of what the future will be like: lots of doctors’ visits and the possibility of complications. But she also knows that she has been able to lead a full life.
“They caught his so much earlier,” she said. “If I got through it as a kid in the '80s, I feel like his prognosis is good.”
As Republicans make another push to replace Obamacare, Kimmel wound up taking some flak from conservative pundits for his comments on health insurance in the speech.
“Before 2014, if you were born with congenital heart disease like my son was, there was a good chance you’d never be able to get health insurance because you had a pre-existing condition,” he said on-air after announcing his son's condition. “If your baby is going to die, and it doesn’t have to, it shouldn’t matter how much money you make. I think that’s something that, whether you’re a Republican or a Democrat or something else, we all agree on that, right?”
Fox said that her condition put the insurance debate in perspective.
“As someone who has had a pre-existing medical condition since I was born, I've never taken health insurance for granted,” she said. “Anyone should be able to take their child to the physician and have it be taken care of.”
What is tetralogy of Fallot?
The condition is a rare heart defect that occurs in about five out of every 10,000 babies, according to the National Heart, Lung and Blood Institute.
It is a congenital heart defect that occurs when either atria or ventricles in the heart are improperly structured. Most children with the disease live to adulthood but may require lifelong medical checkups to lead a healthy life.
The exact cause is unknown, but risk factors are believed to include the pregnant mother using alcohol, having rubella or diabetes, or being older than 40.