Prior to the late 1930s, if your baby was born with a congenital heart defect (CHD), chances are doctors suggested you save for a funeral instead of college funds or wedding dowries. Morbid but practical advice; at the time, less than 20 percent of pediatric CHD patients lived to see adulthood. But thanks to advancing technology and the brilliant minds and hard work of many dedicated medical professionals, this type of bleak worldview is no longer applicable to most babies born with a CHD. Current data shows that over 90 percent of children born with one of these heart conditions now survive to adulthood.
This incredible success has led to an unexpected new medical specialty: caring for adult survivors of CHDs who experience later-life complications from their original conditions and treatments.
“The changes that occurred over the course of a few decades were so radical in terms of survival, that the optimism seen by patients and families at the time lead many to think, ‘my child is cured,'” says Michael Landzberg, MD, in Cardiology at Children’s Hospital Boston. “But it’s usually not that simple.”
In the early 1990s, after years of continuing advancements in pediatric cardiovascular treatment and research, the medical community had collected enough data to recognize that post pediatric care, many young survivors of CHD procedures experienced medical concerns later in life related to their original condition or treatment. Landzberg says many factors could be attributed to continuing health problems in CHD surgery survivors, but loss of care–a decline in the quality or frequency of medical attention a patient receives– is the most significant obstacle to their overall wellbeing.
In response to the changing landscape of CHD survivors, Children’s and other hospitals created the Boston Adult Congenital Heart service (BACH) in 1992, where specially trained health care providers offer life long treatment for former CHD patients, tailored to their particular medical needs.
Since its inception, BACH has seen several changes in the medical and patient realms which have aided its mission to better care for survivors of pediatric CHD surgery. From a medical standpoint, an increase in the number of med-ped professionals (care providers with backgrounds in both pediatrics and adult medicine) and midlevel practitioners (nurse practitioners and physician assistants) working in the field has vastly improved the quality of care available for these patients. From the former CHD patient perspective, more and more patients now understand continual treatment and monitoring will be required for the rest of their lives and many are taking a proactive role in their own care.
Even as modern medicine continues to make strides in treating kids born with CHDs, Landzberg says the common sense advice most people heard as children–like eating well and getting moderate exercise–is now being scientifically recognized as sound advice for CHD survivors too.
“The limits we overtly or subconsciously put on some patients in the past, like don’t exercise or train your muscles, don’t go out and meet certain physical demands, the general medical community now feels that advice was way off base,” he says. “There is a huge shift that suggests people with mild, moderate and severe heart issues should sustain fitness, sustain a low body mass and sustain low risks in regards to nutrition. All the things that grandma told you was good for your heart are in fact good for this population’s hearts as well.”