Adults with congenital heart disease: Patched but not cured

Every year, 40,000 babies are born with a congenital heart defect, the most common birth defect in the country. This occurs when the heart or blood vessels around the heart don’t form as they should before a baby is born.

In the past, less than 20% of these children survived to adulthood. With major advances in the medical and surgical management of congenital heart disease, more than 90% of all children born with heart defect now survive to adulthood. This is a major success story in the medical world, but this has resulted in a new population of adults with congenital heart disease. There are now over one million adults with congenital heart disease living in America. While these patients have survived and done well, they remain at lifelong risk for late problems.

If you or a loved one had surgery as a child for a congenital heart defect, intermittent, lifelong follow-up care in a center specialized in the care of the adult with congenital heart disease is critical. When children are born with congenital heart defects, they’re treated by a specialist and cared for as they grow. But what happens as these children becomes adults and face new and added stresses that come with aging? This is where the field of adult congenital heart disease comes in.

At the Chicagoland Children’s Health Alliance, we’re dedicated to providing outstanding care to children with congenital heart disease. Chicago Alliance for Adult Congenital Heart Disease Care is an extension of this program, offering patients with congenital heart disease cutting edge, expert care from fetal life through adulthood. This program bridges the gap between being a pediatric patient and an adult.

We know outcomes are better when a person is cared for in a specialized center. We’re learning more about the field every day through research and trials, rewriting the way things are done on a national level and discovering new ways to follow patients. Everything we do is intended to also help the next generation. Seeing patients do well is what it’s all about. It’s no different than watching your children grow up.

I’ve worked in this field for almost two decades and have followed more than 3,000 adult congenital patients. Every person is different, but one thing remains the same – we’re focused on achieving each individual’s desired quality of life. We want people to do the things that are important to them, whether it’s getting married, traveling, having kids or finding a career that leaves them fulfilled.

For these things to happen, patients need intermittent follow-up for life. To most people, this means an annual visit. Others who have had excellent results may need to be seen every 2-3 years.

To parents of children with congenital heart defects, and to adults living with congenital heart defects – know you are not alone. There are millions of people across the world facing similar challenges. But we are here for you. To schedule an appointment, call (312) 674-2100.

Dr. Michael Earing is division director of pediatric cardiology for the Chicagoland Children’s Health Alliance, a partnership between Advocate Children’s Hospital, Pediatrics at NorthShore University HealthSystem and University of Chicago Medicine Comer Children’s Hospital. He specializes in adult congenital heart disease, Marfan Syndrome, familial aortic aneurysms, pulmonary hypertension and pediatric cardiology.