Jessica Cowin - Go Red For Women Real Woman and Manager, Research and Advocacy at The Children's Heart Foundation
Jessica received her Bachelor’s degree from DePaul University in Business Management and Entrepreneurship and her Masters from DePaul in Health Communication. She also wrote and published her memoir, The Hearts of a Girl, in 2016. Today, she is a Go Red For Women Real Woman and Manager, Research and Advocacy at The Children's Heart Foundation. The American Heart Association and The Children’s Heart Foundation jointly fund annual Congenital Heart Defect Research Awards, collaborate to raise awareness of congenital heart defects, and support the congenital heart defect community through the Support Network.
I was born with a rare and severe congenital heart defect called hypoplastic left heart syndrome (HLHS) as well as two other defects, double-outlet right ventricle (DORV) and mitral atresia (MA).
My mom was told I would need a series of three palliative surgeries, culminating in the Fontan. These surgeries would improve the flow of oxygenated blood. The first was when I was four days old, with the second at 18 months, and the third at 5 years of age. At the age of 13, the doctors revised the Fontan that included a pacemaker. It was around this time that we were waiting in the clinic for my cardiologist when my mom noticed a poster on the back of the door for The Children’s Heart Foundation. It was the first time we had heard of the foundation and my mom knew that we had to get involved. We volunteered for The Children’s Heart Foundation and have been a part of the organization since I was 14.
There is no cure for HLHS and when my heart enlarged to twice the size of my fist, I was in congestive heart failure and there was nothing the doctors could do. During my next visit to my cardiologist, he sat down next to me and told me that there was nothing more he could do and that I was going to need a heart transplant. The HLHS life was all I knew. I had no idea that a transplant was ever a possibility. The following week I was being worked up for a heart transplant and was put on the list. On Saturday, September 25, 1999 my mom answered the phone. It was the transplant coordinator telling her that they had a heart for me, after only three weeks on the waiting list. Nearly ten years later, I went into kidney failure, due the immunosuppressive medications I had to take, to keep my heart from rejection. My younger sister saved my life by giving me one of her kidneys. It has been nearly 21 years post-heart transplant. I am working at the organization that I grew up with; where my mom found support and my sister played.
I received my Bachelor’s degree from DePaul University in Business Management and Entrepreneurship and my Masters from DePaul in Health Communication. I also wrote and published my memoir, The Hearts of a Girl, in 2016.