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started as a parent and family advocacy group, first endorsed the creation of a special Adult Congenital Heart Disease( ACHD) training pathway. By 2012, the American Board of Medical Specialties recognized ACHD as a formal subspecialty, and in 2015, the American Board of Internal Medicine administered the first board exam for ACHD. By 2021, a two-year formal advanced fellowship program in Adult Congenital Heart Disease was required to sit for the ACHD board exam.
While the progress is encouraging, at present, fewer than 500 boarded ACHD cardiologists exist in the U. S. to serve a population of about 2 million ACHD patients. And even today, a place that ACHD patients can call their medical home is few and far between.
I never forgot Skye. A decade after I stood at the foot of her bed, I became that one person I imagined should be able to walk into that room, smile and have a plan. But after a four-year Med-Peds residency, three-year Pediatric Cardiology Fellowship and two-year ACHD fellowship, I didn’ t want to be a cog in a wheel – I wanted to build an ACHD program. I came from Stanford University to the University of Louisville and Norton Children’ s Hospital in 2019. We were a small team to start, but with a great deal of dedication and collaboration, we achieved accreditation as a Comprehensive Adult Congenital Heart Disease Center, the highest designation, by the Adult Congenital Heart Association the following year.
I intentionally chose a center with physically connected adult and children’ s hospitals, which more easily fosters partnership with adult hospitalists and subspecialists while still being able to provide cardiac care by congenitally trained cardiac surgeons, cardiologists, interventionalists, electrophysiologists, radiologists, advanced practice providers and nurses. We worked with hospital administration to allow both adult and pediatric subspecialists cross-privileges on both sides of the street, so that for instance, an ACHD patient post congenital heart surgery performed at the children’ s hospital could be seen by an adult nephrologist while the patient recovered in the pediatric cardiac intensive care unit. We continue to build relationships and provide ACHD education to our“ champions” on the adult side, which may range from a handdrawn heart diagram at the bedside to our annual ACHD Symposium that we host every fall. We find that ongoing exposure to our patient population combined with focused education allow our colleagues on both sides of the street to take on more in ACHD care, once the barriers of congenital complexity and their“ adultness” are broken down. And now, whether one of our patients is having chest pain, a heart surgery or a baby, they know exactly where to call home.
Dr. Perrotta is an Associate Professor of Pediatrics, Medical Director of Adult Congenital Heart Disease and the Assistant Program Director of ACHD Fellowship Program at the University of Louisville School of Medicine and practices at Norton Children’ s Hospital.
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