Adult Congenital Heart Disease

Adult Congenital Heart Disease

As many as 1 in 120 people are born with congenital (present at birth) heart defects. These defects range from simple to complex, often present in combination and include the following malformations of the heart:

• Structural: Atrial or ventricular septal defects
• Outflow tracts: Aortic and pulmonic
• Valves: Tricuspid, pulmonary, mitral and aortic
• Great vessels: Aorta and pulmonary artery

Prevalence of congenital heart disease

Congenital heart defects are often diagnosed and treated during childhood, but at least 10 percent of all congenital heart defects are first diagnosed during adulthood.

There are currently one million adults and 800,000 children in the United States living with congenital heart disease. Continued improvement in the medical and surgical care of patients with congenital heart defects means more than 90 percent of children born with heart disease are now expected to survive to adulthood.

Evaluation and treatment

Adult congenital heart disease patients will complete an initial patient evaluation that includes:

• Investigation of the original heart defect through review of old medical records, including past procedures and surgeries
• Thorough medical examination of the patient to identify and diagnose continuing or new cardiac problems

Based on the initial evaluation, we formulate a plan of care, collaborating with a team of specialists in cardiac imaging, electrophysiology, interventional cardiology, heart failure cardiology and cardiac surgery. 

We believe collaboration is important for successful outcomes, so we share the plan of care with your referring doctor and stay in communication throughout treatment.

Lifelong care

Northwestern Medicine recognizes that congenital heart disease is a lifelong condition and offers patient education and counseling on topics relating to:

• Living a productive life
• Finding (and keeping) insurance
• Exercising and staying active
• Planning a family and addressing potential reproductive issues
• Coping with the psychological aspects of heart disease