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
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 started tearing up. It meant so much to me that I could give her hope.”
“At some point, you have to take over your own health care. Parents aren’t going to be there forever. Your doctors and primary care givers won’t be consistent, either; you have to learn to take care of yourself.”
Jennifer graduated from Regis College in 1991, went on to work in the Boston area and transitioned from her pediatric cardiologist to the Boston Adult Congenital Heart Program (BACH), a joint collaboration between Boston Children’s and Brigham and Women’s Hospital focused on the unique issues faced by adults living with congenital heart disease. Her primary doctors were Dr. Laurence Sloss and Dr. Michael Landzberg, who now directs the program.
Have a support system
“Looking out for yourself doesn’t mean you have to go it alone! I’ve often brought my parents or my brothers and now my husband Jim to absorb information and take notes in case I don’t catch everything. That person can be an advocate for you.”
Listen to your body
In May 2014, Jennifer, then 47, was getting ready for her wedding and felt what she assumed were run-of-the-mill, pre-wedding jitters. But when she still felt the rapid beating in her heart after her honeymoon, she decided to see her cardiologists … and discovered she was having atrial flutter. That meant abnormal electrical signals were circulating in the upper chambers of her heart. This causes the lower chambers to beat too fast, and the heart struggles to pump enough blood throughout the body.
Jennifer needed surgery urgently. Dr. Sitaram Emani re-routed the electrical pathways in her heart and performed multiple cardioversions (sending an electric shock to the heart) to help restore normal rhythm.
Trust your team
“Recovery was much harder than when I was 30,” Jennifer admits. (She had surgery to close an atrial septal defect, or hole in her heart, at 30.) “But it wasn’t awful! I had so much support from family, friends and the team at Boston Children’s; they gave me confidence.
“Dr. Keri Shafer, my primary cardiologist, and the whole group are always there when I call,” she says. “I carry all of their cards in my wallet. I haven’t moved from the area, and I tell my husband we never will! Half a century later, and I still haven’t cut the cord.”
A final note
“This is my normal,” says Jennifer. “I don’t know anything else. I don’t look at it like it’s a bad thing; I look at it as a blessing. You become more empathetic and able to relate to others’ struggles. Everyone has something, and the more you share your story with others, the more you realize how common it is.”
Learn more about the Boston Adult Congenital Heart Program (BACH).