“I was very lucky to be born when I was,” says Gretchen Hall, talking about her congenital heart disease.
Born a “blue baby” in 1960, Gretchen’s parents were told that her chances of living very long were low. Her parents prayed she would be with them for a year.
Gretchen was born with cyanotic heart disease, the combined result of a number of different cardiac defects that ultimately cause low-blood oxygen level. (When babies aren’t getting enough oxygen, their skin appears blue, which is why they are called “blue babies”). In the 1960s, only a few hospitals in the U.S. were doing heart surgery on children born with congenital heart disease.
Shocked and afraid, her parents didn’t know where to turn. Joel and Ruth Hensel lived in rural Michigan, far from any medical center that could perform the complex surgery that might save Gretchen’s life.
After consulting with doctors near and far, they followed the recommendation of their family general practitioner who told them to go to Dr. Michael DeBakey, a surgeon experimenting with a number of cardiac procedures, in Houston, Texas. In the summer of 1964, Joel and Ruth left their two other young children at home and packed Gretchen, then 3, in the car for the long drive to Houston. …
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.’”
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
“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).