My heart hero, Megan, was born May 12, 1992, following a completely normal pregnancy. Two days after she was born, however, my life would change forever. Megan was born with a complex congenital heart disease called single ventricle. She was transferred to Children’s Hospital of Philadelphia (CHOP) from our local hospital, and our family’s journey with CHOP began.
In her first two years of life, Megan underwent three open-heart surgeries leading to the Fontan, which ultimately re-routed her blood flow from her heart and lungs to the rest of her body. In the early years of Megan’s life, I struggled with denial. I just wanted to be a “normal” family, enjoying our lives. After a family skiing vacation in Colorado, however, Megan began experiencing symptoms related to protein losing enteropathy (PLE).
PLE is a complication that impacts some Fontan children. It develops because of high pressure and congestion in the veins due to Fontan circulation. This high pressure can cause leakage of important proteins into the intestine, which then causes fluid build-up, swelling and other serious symptoms.
Following Megan’s PLE diagnosis, her high school career included an inpatient hospital stay each year. Her peers began to understand that she was living with a chronic illness, and my desire for a “normal life” began to shift. During this time, Megan was so impressed with the staff at CHOP that she truly saw her visits as an opportunity to see her friends. She dreamt of one day becoming a Cardiac Center nurse. Following graduation, Megan was fortunate enough to attend college for one semester. She embraced any opportunity to allow her life to help other congenital heart disease patients, participating in multiple medical research projects.
As Megan planned for her second semester of college, however, she became very ill. Her PLE had caused an imbalance in her body, and Megan was soon diagnosed with non-Hodgkin’s lymphoma. After a hard fight, Megan lost her life on June 16, 2011, at the age of 19.
It may be hard to believe, but I still know hope lives at CHOP. If it wasn’t for the care Megan received, we wouldn’t have had a beautiful 19 years together, and Megan wouldn’t have had 19 years of a quality life. I would do anything to have my daughter back, but I believe her struggle happened for a reason. Megan always wanted her life to help others, and, through advocacy and support communities, her story always will.