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Years ago, the prognosis was bleak for babies and children diagnosed with congenital heart disease. In fact, the term “adult congenital heart disease” was rarely applicable because children with this condition often wouldn’t live into adulthood. But thanks to innovations in medication, surgery and monitoring, that is changing. Today, 90% of babies born with congenital heart disease live into adulthood, many with very few limitations.

Adult congenital heart disease (ACHD) impacts over two million Americans. Congenital heart problems are present at birth and usually impact the structure of the heart. The structural defect could be the result of extra connections, a valve issue or underdeveloped parts of the heart.   The causes of CHD are largely unknown, but doctors believe that genetic and environmental factors (smoking during pregnancy, alcohol or drug use or infection in utero) could come into play.

Elizabeth Adams, DO, is a St. Luke’s cardiologist with specialized training in adult congenital heart disease. She’s the only board-certified ACHD specialist in the region and she’s also board-certified in both pediatric cardiology.

Although it’s rare, congenital heart disease sometimes goes undetected in babies and children, and is then diagnosed in adulthood, but the majority of cases are diagnosed within the first year. Symptoms like heart murmurs, cyanosis (bluish color to the skin or mucous membranes), clubbing of the finger or toe nails, shortness of breath and excessive fatigue can be picked up by pediatricians during yearly well visits. Diagnostic tests like electrocardiograms (EKG or ECG), chest X-rays, echocardiograms (ultrasound) or cardiac MRIs are used to pinpoint the issue.

“We're seeing a fairly sizable adult population with complex congenital heart disease that is best treated by someone with specific training in adult congenital cardiology,” says Dr. Adams. “For the first time in the United States, there are more adults living with congenital heart disease than children with congenital heart disease, a trend that is expected to continue. Treating an adult with congenital heart disease is different than treating a child because adults often have comorbidities like coronary heart disease, diabetes, obesity or kidney disease, all of which can have various effects on the heart, making treatment more complex.” 

Although ACHD patients can never be “cured,” there are methods of “palliation” or managing symptoms. “These patients need lifelong care, and there are definitely ways to live a long and happy life with ACHD thanks to medication, surgery, and advanced, consistent monitoring,” says Dr. Adams. Depending on the case and specific heart defect, most ACHD patients have very few limitations, but Dr. Adams cautions them to consult with their physicians before engaging in any physical activity. “Some adults living with CHD were probably told as children that they couldn’t exercise, but these guidelines have changed,” explains Dr. Adams. “Of course, you should listen to your body and watch out for signs like chest pain or shortness of breath, but most patients can engage in cardiologist-approved exercise, which can be great for the patient’s overall health.”

Dr. Adams also advises ACHD patients to be their own advocates which means being educated about what it means to have congenital heart disease. She explains, “ACHD can impact many other facets of health, so it’s important to know exactly what heart defect you have, what that means and what medications you are taking in what doses - it’s vital because of possible drug or treatment interactions.” 

Too often patients with ACHD don’t get the proper monitoring and consistent check ups because they have to travel to see specialists. “It’s exciting to offer care for ACHD patients close to where they live so they don't need to travel out of the area for monitoring and treatment,” says Dr. Adams. “Now they don’t have to delay or have gaps in treatment because they have access to a provider specifically trained to take care of ACHD patients within the St. Luke’s Network.”

Make an appointment to see Dr. Adams, St. Luke’s Cardiology Associates today.

St. Luke’s Cardiology Associates

(Adult Congenital Patients Only)

St. Luke’s Anderson Campus- MOB

1700 St. Luke’s Boulevard

Suite 301

Easton, PA 18045

484-822-5099