Adult Congenital Heart Disease

Working together to improve critical outcomes for all heart failure patients with adult congenital heart disease.

The heart is a pump that circulates blood and oxygen throughout the body. “Heart Failure” occurs when a dysfunctional heart is no longer able to keep up with the body’s demands. In adults born with heart defects, even those who have had a repair in childhood, heart failure is the second most common reason for hospitalization and is the most common cause of death.

As estimated 1 in 10 people are born with heart defects, making them the most common form of birth defect in the western world. In the United States alone, there are estimated to be 40,000 people born with heart defects annually. Due to remarkable heroism on the part of pediatricians and pediatric cardiac surgeons, nearly 98% of these children live to adulthood and today there are over 1.5 million adults born with heart defects living in the United States.

Adults with congenital heart disease who develop heart failure may present in many different, nonspecific ways making the diagnosis challenging. Often, the condition can be severe, debilitating and even life-threatening. Heart failure in adults with congenital heart disease remains poorly understood and the evidence to guide management and therapies is quite limited.