According to the Adult Congenital Heart Association (ACHA), Congenital heart defects (CHD)—problems with the heart’s structure that are present at birth—are the most common birth defects, occurring in nearly one out of every 100 babies. Holes in the heart and misplaced, malformed, and/or missing valves, vessels, and heart chambers are among the most common CHDs, and many CHD cases involve a combination of these problems.
Not that long ago, most children born with a CHD were not expected to survive to adulthood. But today, owing to advances in medicine, that’s no longer the case. In the United States alone, there are currently 1.3 to 1.5 million adult survivors of CHDs. In fact, there are now more US adults living with CHDs than there are children with them.
“Twenty-five years ago, upwards of 80 percent of kids with congenital heart defects died by adolescence,” explains Dr. Julie Kovach of the UTMC Heart & Vascular Specialty Clinic. “Nowadays, thanks to technological advances and the expertise of pediatric cardiology surgeons, at least 95 percent of kids with CHD survive to adulthood, some with very complicated problems such as hypoplastic left heart syndrome. At one time, the mothers of children born with this condition were told to take them home and keep them comfortable until the end. Now these kids are graduating college.”
Though this increase in CHD survivorship is a welcome development, it does present a unique challenge: very few practitioners are properly trained to provide the specialized care this population requires, so many CHD patients don’t know where to turn for ongoing care when it’s no longer appropriate to see a pediatric cardiologist. As a result, fewer than 10% of adults with CHDs in the US who need care from specialty adult CHD centers are receiving this recommended care.
These facts, provided by the ACHA, explain why this lack of access to specialized care is such a significant concern for adults with CHDs:
- Adults with CHDs continue to face a high risk of early death and disability.
- Individuals with CHDs often need additional operations and/or medications as adults. This is true even when they’ve had a successful repair.
- Common long-term problems of CHDs include developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest, stroke, and premature cardiovascular death.
- Compared to the general population, adults with CHDs have three to four times higher rates of emergency room visits, hospitalizations, and intensive care unit stays.
People with CHDs are now living long enough to develop new problems such as high blood pressure, obesity, and acquired heart disease like the rest of the adult population.
What’s more, between 15 and 20 percent of adult CHD patients are unaware of their condition. Oftentimes, it’s not until certain symptoms arise later in life that the defect becomes evident. “For example, a small hole in the heart may not manifest itself until middle age or later, when the individual develops a heart rhythm problem,” Kovach says.
The good news is, the medical community is taking steps to address this shortfall in access to specialized care. Kovach notes that an accreditation process has been implemented to standardize the quality of care for adults with CHDs, and a board-certification program is now in place so both pediatric and adult cardiologists can get certified in treating this complicated patient population.
After more than 25 years of informal training in this specialty—acquired by working closely and collaboratively with pediatric cardiologists—Kovach is now among the few physicians in northwest Ohio who are board certified in treating adults with CHDs. “This process has been very exciting, but we’re still very small in number. The board-certification exam has been administered twice so far, with a total of 190 cardiologists across the country successfully passing the first one and an even smaller number passing the second. Across North America, there are only about 400 of us, and I’m the only one in Toledo,” she says.
Kovach further remarks that the board-certification exam was among the most challenging she’s taken—and she’s taken quite a few over the years. “In addition, a high score is needed to pass the exam, which ensures you have the necessary expertise to treat the complex problems these patients experience,” she states.
Extensive literature shows that people with CHDs live longer when they’re cared for by experts in adult CHD, such as the team at the UTMC Heart & Vascular Specialty Clinic. Also, according to best practices and guidelines put forth by the American College of Cardiology and the American Heart Association, adults with CHD should be seen at least once by an expert in adult CHD, and those with more complex cases should receive the majority of their care from such an expert. “If you have questions about a congenital heart defect, or you were followed for a CHD in childhood but haven’t been as an adult, we urge you to come in for a checkup. We can pick up on problems before they become major issues and make sure you get the specialized care you need,” says Kovach.
Patients do not need a referral to see Dr. Julie Kovach. Appointments can be made by calling The UTMC Heart & Vascular Specialty Clinic at 419-931-0030.❦