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Congenital heart disease patients living longer

Patients born with heart defects receive comprehensive care, from birth through adulthood, at OHSU
woman standing on a bridge
Melissa Nelson, 34, was born missing a tricuspid heart valve and half of her heart underdeveloped. She first underwent open-heart surgery at age 4 and has had a pacemaker implanted four times, among many other procedures. (Photo courtesy of Melissa Nelson)

When Melissa Nelson was born at OHSU in Portland, Oregon, her tricuspid heart valve was missing and half of her heart was underdeveloped. She first underwent open-heart surgery at age 4 and has had a pacemaker implanted four times, among many other procedures.

“My family and I never knew when my next surgery was going to be,” Nelson said. “It’s pretty scary to be living like that as a kid.”

Today, Nelson, 34, teaches second-grade Spanish at a dual-language school in Vancouver, Washington. Though she lives a full life, keeping on top of her health continues to be key. To make that happen, she works closely with clinicians at the OHSU Adult Congenital Heart Disease Clinic.

Congenital heart defects aren’t limited to the young, as Nelson can testify. Thanks to advancements in medical care, there are now more U.S. adults – about 1.4 million – than children living with congenital heart disease today.

Comprehensive care for adults

OHSU is home to Oregon’s only comprehensive center for adult congenital heart disease patients, and OHSU Doernbecher Children’s Hospital offers the broadest spectrum of pediatric heart services in the region. OHSU’s pediatric and adult specialists work closely to ensure the unique needs of those born with heart defects are met throughout their lives.

child in hospital bed
“My family and I never knew when my next surgery was going to be,” Nelson said. “It’s pretty scary to be living like that as a kid.” (Photo courtesy of Melissa Nelson)

Though some patients born with congenital conditions keep seeing the same pediatrician who originally treated them as children, there’s a growing medical consensus that transitioning to an adult provider helps patients receive better treatment as they age. The American Heart Association recommends congenital heart disease patients see an adult congenital heart specialist at least once as a grown-up.

Congenital heart defects are often repaired when patients are young, while other related conditions are ongoing or arise later in life. For example, Nelson was 9 when she started experiencing irregular heartbeats as a complication from her numerous surgeries. The condition finally subsided four years ago after an ablation procedure removed troublesome heart tissue.

Patients, physicians team up for health

Nelson’s primary cardiologist is Abigail Khan, M.D. Kahn is one of the 300 active board-certified specialists in adult congenital heart disease in the U.S.

Khan considers herself a partner in her patients’ health. For many young adults in her care, medical choices were made by others when they were children. Now they are embracing their new-found autonomy. Khan carefully listens when her patients suggest something is amiss, noting people who have long lived which chronic disease are often well-tuned to their bodies.

doctor reviewing scans of a heartr
Adult congenital heart disease care is a relatively new field because, decades ago, most children born with defects didn’t live long enough to reach adulthood. Abigail Khan, M.D., is one of 300 active board-certified specialists in adult congenital heart disease in the U.S. (OHSU/Kristyna Wentz-Graff)

Adult congenital heart disease care is a relatively new field because, decades ago, most children born with defects didn’t live long enough to reach adulthood. Medical science is still learning the unique challenges faced by these patients. As a result, the small community of adult congenital heart disease specialists often confer with each other to assess treatment options.

“I try to be honest with patients about what we do know and what we don’t,” said Khan, who is also an assistant professor of medicine (cardiovascular medicine) in the OHSU School of Medicine. “Many of our patients are honestly quite comfortable with that concept, because they’ve lived their whole lives knowing the future is uncertain.”

Looking beyond heart health

Khan also helps patients understand the broader impacts of the conditions with which they were born.

Adrienne Kovacs, Ph.D
Adrienne Kovacs, Ph.D.

Because adult congenital heart disease patients are at greater risk for depression and post-traumatic stress disorder, Khan sometimes refers patients to OHSU psychologist Adrienne Kovacs, Ph.D., who specializes in helping patients with congenital heart disease.

Nelson uses art to sort through mixed feelings about her many experiences with health care. She creates mixed-media pieces with X-ray film, medical equipment images and personal photos to express frustration over routinely being poked and prodded for tests. She also leans on friends she’s met through the Adult Congenital Heart Association to cope with challenges that others struggle to understand.

“Our bodies have never been ‘healthy,“ Nelson said. “Most adults are healthy for a long time and then suddenly they’re unhealthy. I don’t know what that’s like.”

She’s also an active participant in her own health care. Nelson prepares for every medical appointment by making lists of her questions and concerns, and she routinely reads the latest congenital heart disease research.

“If you want to live your best, healthiest life, you have to keep taking the medication, you have to keep going to the doctor, you have to keep doing those tests,” Nelson said. “It can be really hard, but you have to do it. You have to make peace with it.”

 

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