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Pediatric Cardiologist Helps Children with Congenital Heart Defects Navigate a Lifelong Journey

Children with congenital heart defects are some of the most challenging patients to treat. They often need intricate surgery within hours or days of birth and require specialized lifelong follow-up care. The complex evolution of these cases is what drew Stephanie Gaydos, MD, a pediatric and adult congenital cardiologist at MUSC Children's Health to this field. "There's such an interesting variety in the surgical and medical management of pediatric heart defects," says Gaydos. "Although today, children born with heart defects have better outcomes and survival than in the past, they still experience unique issues as adults. It takes specialized training to really address their needs as they enter adolescence and adulthood."

Gaydos completed medical school at the Southern Illinois University School of Medicine in Springfield and came to MUSC for residency training in Internal Medicine and Pediatrics. She is board certified in both specialties with additional sub-specializations in pediatric cardiology and adult congenital cardiology. She is currently an Assistant Professor of Medicine and Pediatrics.

As a medical student, Gaydos was fascinated by pediatric cardiology but wondered what happened to her patients after their initial heart defect repair. "I remember seeing an adult ICU patient who'd had many childhood heart surgeries, and the care team was perplexed about how her circulation worked. As I took care of congenital heart patients in clinic, the cath lab, the hospital, and the ICU, I learned more about what these children and their families go through and I really like the variety of working across those different care settings," says Gaydos. "On any given day, we might discuss a life-saving procedure for a newborn and later we may see a 30-year-old who's already had four or five surgeries. I particularly enjoyed helping adult patients manage the unique challenges they face, after already surviving so much," says Gaydos.

Gaydos is the first physician in her family and says her grandmother's experience with cancer may have been what turned her path toward medicine. "I wasn't thinking about going into medicine when my grandmother's eye doctor found a brain tumor during an exam. She later developed melanoma. Watching her go through that process of care was pretty inspiring," says Gaydos. "I shadowed some physicians later and did a healthcare service trip to Australia with peers who were also considering a career in medicine. Those experiences helped me visualize what a life in health care was like, and I realized that was the type of lifelong learning I wanted. I'd always wanted my work to have meaning. If I hadn't gone into medicine, I probably would have picked another type of service-related career."

Because cardiac defects can have lifelong implications, physicians who treat these patients must look through a wider lens when making treatment decisions to tailor them to each individual. "Long-term care depends a lot on what the initial condition was. Some lesions don’t cause many additional issues after they're repaired, but many patients do have long-term problems, including higher risk of future heart failure, arrythmias, blood clots, and endocarditis - a heart infection related to repair material in the heart," says Gaydos.

Pregnancy is another concern that Gaydos helps her patients navigate. "It's really important to help young adults think about family planning and pregnancy. Many heart defects have a genetic component, and patients should have counseling about possible genetic evaluation. Also, many repaired heart conditions can make a woman's pregnancy higher risk. These issues don't always come up in their routine pediatric care, and many young adults don't know about these risks. We explain how pregnancy could affect their heart and work with their obstetrician to counsel them about the risks of having children," says Gaydos.

Her interests across the spectrum–from pediatric to adult care - led Gaydos to help create MUSC's Congenital Heart Disease Transitions clinic. "It can be scary for families and patients to transfer to an adult provider after having a significant history with a pediatric practice. We bring up things like how to organize their meds and call for refills and try to assess whether they're ready to start taking more responsibility for their own care. It's also important to look for mental health issues like depression, anxiety, body image issues around scars from prior heart surgeries, or self-consciousness about any cognitive impairments they may have. All of those issues can make them drop out of care during the transition to an adult provider. Our goal is to make sure they stay in care."

Her research includes studies in special populations such as children with Down syndrome - 50% of whom have congenital heart defects - and those born with complex defects such as single ventricle anatomy. "We want to find out whether a history of a heart defect impairs their capacity to have productive lives and good quality of life as an adult, so we know how to better support them to participate or volunteer in the work force."

Dr. Gaydos is currently accepting new pediatric and adult congenital patients at the MUSC Children's Health R. Keith Summey Medical Pavilion in North Charleston, West Ashley Medical Pavilion, and Ashley River Tower in downtown Charleston. Call to make an appointment or refer a patient.

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