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).
Most people with congenital heart disease (CHD) are diagnosed at birth. But Dr. Kornelia “Nelly” Polyak found out about her condition in medical school.
After a lesson on cardiology, the teacher demonstrated an EKG on Nelly. Everyone was surprised by the abnormal result, and an echocardiogram confirmed that Nelly had CHD.
“I didn’t believe it at first. I was active, otherwise healthy, and felt fine — how could I have a heart problem,” says Nelly, who modestly describes herself as “more active than most people.”
Soon she learned she had an atrioventricular canal defect (ASVD), a hole in her heart that disrupted proper blood flow and also affected her mitral valve.
“It was pretty big,” says Nelly, “and I was warned my heart could fail before my 40th birthday if I didn’t have surgery.” …
Before Maria de la Paz was born, her parents Violeta Gustale and Orlando Cazal learned their unborn daughter had a complex congenital heart disease called hypoplastic left heart syndrome (HLHS).
With HLHS, the left side of the newborn’s heart is so underdeveloped that it cannot pump enough oxygenated blood throughout the body. The standard treatment is a series of three corrective surgeries to re-route blood flow through the heart. The first surgery is performed at birth, the second at six months and the third about two or three years later.
Violeta and Orlando were presented with four options:
- Travel from their home in Paraguay to Boston Children’s Hospital for treatment. The Boston Children’s Heart Center had a 95 percent success rate for the surgeries Paz would need (this was in 2011; today, that rate is 97 percent).
- Go to São Paulo, Brazil, where the best hospitals had a 75 percent success rate for the same surgeries.
- Go to Buenos Aires, Argentina, where surgical success rates hovered around 50 percent.
- Stay in Paraguay and have the surgeries there. Paz could be the country’s first success story, and the hospital would cover all medical expenses.
They made their decision right away. Their daughter would be born at Brigham and Women’s Hospital and treated at Boston Children’s.
The words were spoken with a hush, gently and quietly as the dim lights softly flickered in a darkened hospital room as I held my six-and-a-half-month-old child, his last breath taken hours before.
After spending nearly seven months in a pediatric cardiothoracic ICU with my infant son, the hard part should have been behind me. And yet, it wasn’t. I knew it, but I didn’t want to know it.
Life stood still in that moment. I didn’t know how I would pick myself up and keep going. I was young, but my future just looked crumbly. All the perfect pictures I created of how my life would look months and years before.
Mine was supposed to look like two boys, 15 months apart, growing up together, playing cars on the living room floor, me breaking up fights with time outs, them running out to the backyard and getting dirt under their fingernails as they dug for worms. As far as I knew, life would unfold without a hitch. …