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Every parent can relate to that feeling of pure joy when their new baby arrives. Months of waiting turn into years and years of joy and happiness with some inevitable worry now and then. But when your baby is born with a congenital heart defect, that worry can become all-consuming. The heart is so vital to health and growth so when there’s a problem, it’s imperative to be educated about the diagnosis and have support from the very best, most knowledgeable doctors and staff.
One in one hundred babies is born with congenital heart disease, the most common type of cardiac disease in young children. Elizabeth Adams, DO, St. Luke’s cardiologist specializing in pediatric cardiology, explains that congenital heart disease is generally attributed to structural problems with the heart or valves, present at birth. Dr. Adams has practiced at the Children’s Heart Center of Nevada and Penn State Hershey Medical Center and recently brought her expertise to patients in the Lehigh Valley. “It’s very exciting that we’ve assembled an advanced pediatric cardiology team, so our patients can stay within their own community to receive very high level, sophisticated care without having to travel.”
Congenital heart disease symptoms are often evident soon after birth, during the first few months of life or sometimes in later childhood years. Symptoms can include pale gray or blue skin, rapid breathing, swelling in the legs, abdomen or around the eyes, a heart murmur or poor growth. While the nature of the disease can’t be concretely identified, sometimes genetics or environmental factors like maternal smoking, drugs or alcohol come into play. “We don’t know exactly why some babies are born with congenital heart defects, but we do know that if we diagnose them early, treat them and monitor them, they can live healthy, active lives.”
When a problem is suspected, Dr. Adams and her team definitively diagnose the issue through various tests like echocardiography (echo) to look at the structure of heart, or an electrocardiogram (EKG) to look at the rhythm of the heart. “Since most congenital heart defects are structural, testing allows us to see where the defect lies and then decide the best course of action,” explains Dr. Adams. Treatment for these kinds of defects often includes surgery to fix the missing or malfunctioning structure, but Dr. Adams explains that as technology becomes more and more advanced, surgical methods become less and less invasive. Most repairs can be made through a catheterization procedure, which is conducted through a small incision, so recovery time is minimal.
Even with repairs and surgeries, there is no “cure” for congenital heart disease. “That’s not to say that patients can’t go on to lead healthy lives,” explains Dr. Adams. “But monitoring becomes critical, more frequently depending on the severity of the case. It can range from once a month to once every few years, which is why it’s extra comforting for parents to be able to receive this kind of care close to home.”
Dr. Adams feels fortunate that, because of the nature of her specialty, she develops long-term relationships with patients. “A congenital heart disease diagnosis can be devastating for families, but our care team is excellent at helping families get through challenging times - from surgery to regular care visits. We all spend a lot of time with our patients and get to know them and their families over the years.”
Today, over 90 percent of babies born with even the most severe heart problems survive into adulthood, a significant improvement than in years past. But in order to maintain a functional, healthy heart, it’s especially critical for kids born with congenital heart disease to learn and practice a healthy lifestyle which includes diet and exercise, and to never smoke.
To schedule an appointment with Dr. Adams and her team at St. Luke’s Pediatric Cardiology in Coopersburg, call 484-822-5099.
