Jessica Cowin has faced health issues since she was 2 days old — when she was diagnosed with hypoplastic left heart syndrome, a rare birth defect in which the left side of the heart doesn’t develop.
That led to heart and kidney transplants. Now, the 37-year-old Chicago resident is increasing awareness of congenital heart conditions and raising money for medical research.
Jessica Cowin has battled heart-health issues since she was just 2 days old.
That’s why she’s passionate about raising awareness and money as research and advocacy manager for the Children’s Heart Foundation, a national organization that funds congenital heart defect research.
“If you didn’t know my story, you’d see me as normal like anyone else,” said Jessica, 37, who lives in Chicago. “Because of what I went through, I am able to connect with heart kids and their families and really give them hope.”
Jessica was on a heart monitor and doctors became concerned when they noticed an irregular heartbeat because her mom had a normal pregnancy. Doctors determined she had hypoplastic left heart syndrome, or HLHS, a rare birth defect in which the left side of the heart doesn’t develop correctly and blood flow through the heart is impaired.
Jessica had her first heart surgery to repair the defect at 4 days old and another at 18 months, and has had multiple follow-up procedures throughout her life.
She was an active and social kid. But as a teenager, she was constantly physically and mentally fatigued — and sicker. She started to miss a lot of school; homebound services were the only way she could get through school without getting behind.
“I had a constant feeling of exhaustion and cloudiness,” Jessica said. “There was constant pressure in my chest and pain from migraines. When you live with something like that for so long at some point it just became a regular, endless feeling.”
But it was more.
In 1999, her cardiologist determined her heart was failing and she needed a transplant. She was provided a pager to keep nearby in case the hospital needed to reach her or her mom and alert them when a heart became available.
“I remember wanting nothing to do with that pager. It was the icing on the cake to an already rough time,” said Jessica, who was more concerned with getting her driver’s license at age 16. “I really wanted to throw it away.”
Weeks after being placed on a transplant list, a heart became available. To stay positive, she focused on what she would do after surgery, which kept her hospitalized for three weeks.
Through the ordeal, Jessica’s mom, Eileen, taught her the importance of volunteering and assisting nonprofits.
“My mom definitely taught me how to be a strong advocate and empowered me to take care of myself, as a medical necessity,” she said. “My mom taught me the importance of taking my medication and I have been taking it on my own since I was 5.”
Younger sister, Amy, attended Jessica’s medical appointments, strengthening their bond. So when Jessica needed a kidney transplant at age 25, Amy insisted she would be her donor and it turned out she was a near perfect match.
Today, Jessica’s medical experiences inspire her to help others.
“Everything I do is just trying to shine a spotlight on congenital heart defects,” she said. “For so long, it was so hard for me to talk about my health issues. Now, I know how important it is to share my story. What’s the point of keeping it to myself if I can help somebody?”