Life with congenital heart disease: Looking back with gratitude, looking ahead with hope

Jennifer D’Ercole McKenna, 49, is a patient pioneer — part of a small but growing group of middle-age adults with congenital heart disease who had surgical repair in infancy or early childhood. “It’s hard for doctors to answer questions about how long I’m going to live. I ask, ‘Will I live until my 80s?’ and their response is, ‘That’s our goal.’” In 1966, the average life expectancy for someone with Jennifer’s diagnosis, Ebstein’s anomaly, was 37 years (39 for females and 33 for males). Jennifer shares her lifetime of wisdom with parents and children affected by congenital heart disease. Stay active and chase your dreams “I loved taking ballet and gymnastics classes as a child,” she remembers. “Kids with heart conditions can love physical sports or arts and shouldn’t be limited or discouraged from pursuing them. I wasn’t an athlete, but who’s to say I would have been if I had a perfectly healthy heart? You do what you can handle and it becomes part of your personality.” Be intentional about your health   Congenital coincidences In her 20s, Jennifer volunteered at Boston Children’s. Whenever she mentioned to the volunteer coordinator that she had congenital heart disease, she was sent to the cardiac floor. One day, Jennifer was rocking a baby and learned he had the same congenital heart defect as her — Ebstein’s. “He looked so healthy!” she recalls. “His mom came in, and I told her that we had the same thing. She ...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Our Patients’ Stories BACH congenital heart disease Dr. Keri Shafer Dr. Michael Landzberg Dr. Sitaram Emani Source Type: news