"For the first time in history, we have more adults than children with congenital heart disease," says George Lui, MD, medical director of the Adult Congenital Heart Program at Stanford. These survivors of childhood surgeries were once thought to be "cured" with early intervention. But physicians now realize that adults with congenital heart disease need ongoing medical management.
The Adult Congenital Heart Program at Stanford, a collaboration between Lucile Packard Children's Hospital and Stanford Health Care, brings together the expertise of pediatric and adult cardiologists to provide specialty care for adults who were born with congenital heart defects. The multidisciplinary program provides patients with comprehensive diagnostics and counseling, as well as medical, interventional and surgical management.
"What we're trying to teach our patients is that as children, we repaired their congenital heart defect," says Lui, clinical assistant professor of cardiovascular medicine and pediatric cardiology. "We did not cure their problem.
"This population of patients has different health issues than adults with acquired heart disease, he adds, and benefit from specialty care. As adults, many patients experience issues related to their childhood surgeries such as valve problems, abnormal rhythms, and issues related to heart failure. "They need lifelong care so that we may intervene if we need to do another surgery or catheter intervention, or repeat imaging to be preventive about their care," says Lui.
The Stanford program offers specialty care such as advanced treatment options for pulmonary valve repair and percutaneous pulmonary valve replacement in patients with tetralogy of Fallot; transcatheter atrial septal defect closure; innovative treatment options for Ebstein's anomaly; ventricular assist devices for end-stage heart failure; heart/lung transplantation; prepregnancy counseling, genetic counseling and high-risk pregnancy management; and specialized treatments for patients with a single ventricle.
The program also helps transition pediatric patients to an adult congenital cardiologist during their late teens and early twenties. To help manage this transition, Stanford opened the Adolescent Young Adult (AYA) Heart Clinic. According to its Program Director Susan Fernandes, PA, many children with congenital heart defects see a pediatric cardiologist during childhood, but there is a 20 percent drop when they transition to an adult specialist. The AYA Clinic works with patients ages 15 to 25 to help them gain self-management and self-advocacy skills. "We want to make sure our patients are ready for the autonomy that's necessary to navigate the adult side," she says.