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 - Northwestern Memorial Hospital - Chicago

Adult Congenital Heart Disease

Congenital (meaning present at birth) heart defects affect one in 120 people born. 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

These 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 living with congenital heart disease in the United States with the adult population expected to grow by 5 percent annually. As a result of continued improvements in the medical and surgical care of patients with congenital heart defects, over 90 percent of children born with heart disease are expected to survive to adulthood. 

Established in 1990, the Program for Adult Congenital Heart Disease at the Bluhm Cardiovascular Institute of Northwestern Memorial Hospital was developed to provide consultation and treatment for adults (eighteen years and older) born with a heart defect. The Program for Adult Congenital Heart Disease combines the expertise of cardiologists and cardiac surgeons from both Northwestern Memorial Hospital and Children's Memorial Hospital that are specifically trained in treating adults with congenital heart disease. Medical director, Marla A. Mendelson, MD and colleague R. Andrew de Freitas, MD, along with surgical director Hyde M. Russell, MD lead an outstanding multidisciplinary staff that coordinate the overall management and care of the adult with congenital heart disease.

The initial patient evaluation includes:

  • Investigating 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, the plan of care is formulated with the assistance of a team of medical specialists with expertise in cardiac imaging, electrophysiology, interventional cardiology, heart failure cardiology, and cardiac surgery. The plan of care is then communicated and discussed with the patient's referring physician. Incorporating the patient's referring physician and/or cardiologist into the delivery of care is an essential and highly endorsed practice of the Program for Adult Congenital Heart Disease for delivering exceptional and seamless care.

Recognizing that congenital heart disease is a lifelong condition, the program also offers patient education and counseling on topics relating to:

  • Living a productive life
  • Insurability
  • Activity and exercise
  • Family planning and reproduction
  • Psychological coping


For more information regarding adult congenital heart disease and available treatments, please contact the Bluhm Cardiovascular Institute at 1-866-662-8467 or request a first time appointment online.

In addition, a credible source of information about adult congenital heart disease is the Adult Congenital Heart Association (ACHA). Please visit the ACHA Web site.

Last UpdateJanuary 24, 2012