By AMERICAN HEART ASSOCIATION NEWS
Ten months after she was born, Lauren Evanovich had open-heart surgery to repair a hole in her heart and aortic valve.
As she got older, Evanovich avoided strenuous activity and saw a cardiologist twice a year. Otherwise she didn’t think much about what her congenital heart defect meant for her future. But at age 24, her perspective changed after learning she would need valve replacement surgery.
“The surgery I had as an infant was what my parents went through, but having it happen as a young adult changes your outlook on life,” she said.
An estimated 40,000 babies are born each year with congenital heart defects, and about one in four has a critical congenital heart defect that requires surgery within a year.
More patients are living longer thanks to medical advances in detecting and treating congenital heart defects, also known as CHDs. In fact, a recent study estimates that in the United States there are more adults living with CHD than children — 1.4 million adults compared with 1 million children.
But the transition to adulthood can pose its own challenges and is an important time for CHD patients, who require specialized care throughout their lifetime, said Dr. Dianne Atkins, a pediatric cardiologist.
Starting in adolescence, CHD patients should talk with their doctors to learn more about their condition, their treatment history and what may be needed in the future, said Atkins, who is professor emeritus at the University of Iowa.
“As young children, they may have been aware, but not participating in decisions because their parents have taken care of everything,” she said.
Atkins said adult CHD patients should seek care from a cardiologist specializing in adult CHD who understands the challenges they may face, the medications, and the additional surgical or catheterization procedures that are needed.
“Patients should ask, ‘What do you expect for me in the next 5, 10 or 20 years down the road?’ ” Atkins said. “Some of those questions we can’t completely answer, because care improves. But there are general things that can be discussed, like the need for more surgery, the development of heart rhythm issues or long-term consequences of altered blood flow.”
For young patients moving away from home for the first time — to start college, for example — Atkins encourages them to find a local specialist they are comfortable with who can provide care if anything happens. CHD patients of all ages should also adhere to a heart-healthy lifestyle, including maintaining a healthy weight and blood pressure and avoiding smoking, she said.
“Their hearts have already been stressed, so you don’t want to add any extra pressure,” she said.
Evanovich knew she’d need a valve replacement one day. Doctors guessed that time would come in her 40s or 50s. But by the end of her second year of teaching, 24-year-old Evanovich found herself getting easily fatigued. Surgery would be needed now.
Doctors met with Evanovich and her parents to outline the options: a mechanical valve that could last 30 years but would require anticoagulation therapy, or a bovine tissue valve that would last 15 years but wouldn’t require her to take blood thinners.
“My dad immediately said, ‘We’re going to do the mechanical one,’ and I told him it was not his choice,” Evanovich said. “It was the first delineation that managing my condition would be my decision.”
She chose a bovine valve. Recovery took three months, although Evanovich said it was a year before she felt back to normal.
“As I’ve gotten older and learned more about my condition, I realize that it’s not something that is ever ‘fixed,’ ” she said. “This is a lifelong battle and I have to learn how to navigate it for the rest of my life.”
Now 30, Evanovich recently earned a doctorate in special education and now teaches and conducts research at the University of South Florida in Tampa, Florida. She credits medical research for the advances that have kept her alive.
Wednesday is the start of CHD Awareness Week. The Children’s Heart Foundation and American Heart Association are among the groups advocating for more research and national policies to support early detection of heart defects. The two nonprofits have pledged to fund $22.5 million in CHD research between 2014 and 2021.
Evanovich said her transition from pediatric care to adult care extended beyond just health care.
“The transition [is] more broadly about how you’re living life and what impacts your decisions,” she said. “While my heart health is always in my mind, I also make sure to not view it as an inhibitor; I focus instead on what I can give to others.”
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