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Miracle Babies; Former "miracle babies" now face adult health problems
WVU pediatric cardiologist Larry Rhodes, MD, has worked with babies and young children for years, helping diagnose and treat congenital heart defects that used to be universally fatal.
About one in 150 infants is born with a heart defect. With treatment, 90 percent will survive to adulthood.
“The very first surgeries for these conditions were in the 1950s, and it was uncommon until the 1960s and 70s,” Dr. Rhodes said. “But beginning 25 or 30 years ago, the success rates started going up. There are currently about 800,000 adults in the country today who had congenital heart disease as children. Most of them are leading healthy, normal lives.”
As they grow into adults, Rhodes says, some of these patients are encountering medical issues no one anticipated. “We haven’t put much thought or much research into what will happen when a woman with a surgically repaired heart gets pregnant, or a man with this history develops an adult onset disease like diabetes or glaucoma.”
"My patients have different issues – they were born with holes in their heart, or misplaced or missing parts of the heart that had to be surgically repaired.”
– Larry Rhodes, MD
Cardiologists who treat adult heart disease are rarely are experts in the congenital heart problems these patients experienced, he said. “Most adult cardiologists deal with failing valves, arterial congestion or other problems that develop when a healthy heart deteriorates over time. My patients have different issues – they were born with holes in their heart, or misplaced or missing parts of the heart that had to be surgically repaired.”
Rhodes played an important part in developing the techniques that created the large population of adults who survived childhood heart problems. After his 1984 graduation from the WVU School of Medicine, he trained in pediatric cardiology and electrophysiology at Boston Children’s Hospital, where he worked with one of the medical teams that developed the use of radiofrequency ablation of abnormal heart rhythms in children. He taught in the Harvard Medical School for a year before returning to WVU as director of pediatric electrophysiology in 1990.
From 1995 until earlier this year, he led the electrophysiology program at Children’s Hospital of Philadelphia. While there, his team treated more than 800 children with the radiofrequency technique. He has returned to WVU to lead the pediatric cardiology program at WVU Children’s Hospital.
Some of his patients from the 1980s and ‘90s have already consulted with him about their current issues, and he is working to build a team of specialists – cardiothoracic surgeons, adult cardiologists, internists, obstetricians, and others – who will assist them with the health problems they may face in the future. Such teams have been formed at a handful of the top medical centers in the country.
Childhood heart surgery survivors often face social and psychological problems as well, Rhodes said. Some have difficulty working or forming adult relationships because of lingering behavioral issues related to years of medical treatment, or because they missed out on education, social development or other important parts of childhood. Some have self-image issues because of short stature, scars from surgery, or other long-term side effects of their disease. Many are unable to obtain health insurance.
“In West Virginia, there are additional problems because many adult survivors of childhood heart disease live in rural areas. Access to care is an issue that we cannot ignore.”