A heart is repaired, the patient grows up

Congenital heart disease (CHD), the most common of birth defects, affects more than 32,000 children born in the United States each year. Three decades ago, many of these children would have died shortly after birth, but thanks to great advances in surgical and medical techniques most children with CHD can now expect to live well into adulthood.

To meet the special medical needs of this group, the Yale Medical Group recently launched the Adult Congenital Heart Program, the first program of its kind in Connecticut and one of only two dozen in the country. “We are looking at a population of patients that hardly existed 20 or 30 years ago,” says James C. Perry, M.D., who staffs the program’s outpatient clinic with coordinator Nicole K. Boramanand, A.P.R.N.

The multidisciplinary program provides treatment for common medical problems experienced by survivors of CHD, especially arrhythmias caused by irregularities in the heart’s electrical system and heart failure, which can occur when structural or electrical abnormalities impede the heart’s ability to pump blood.

“Pediatric heart patients were often discharged based on age, but adult cardiologists are not usually trained to manage congenital heart disease. Those patients had nowhere to go,” Perry says. “Our program offers access to pediatric and adult cardiologists and other medical staff with essential expertise.”

The program also offers specialized patient education. “Our focus is on preventive maintenance,” Boramanand says. “What treatments and lifestyle adjustments can increase the length and quality of life? For instance, we emphasize that the old notion that all people with adult CHD should avoid exercise is no longer accepted.”

Those who survive congenital heart disease into adulthood also experience a full range of other health concerns, of course, from catching the flu to developing arthritis to managing pregnancy. Perry notes that the new program will help clinicians learn more about how common health problems affect this population.

Perry and Boramanand predict that vanguard programs like Yale’s will inspire future clinicians to specialize in treating adult survivors of congenital heart disease. “This is a group of patients we are just beginning to learn about,” Perry says. “But to see people with complex congenital heart defects going strong into middle age is remarkable.”