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Adult Congenital Heart Disease

Heart defects are the most common birth defect, occurring in one out of 120 live births. Ninety five percent of these people survive into adulthood, which means that today, there are approximately 1.8 million adults living with congenital heart problems. In addition, 10 percent of congenital heart defects are not discovered until the person is an adult. Today, there are more adults living with congenital heart defects than there are children.

While many defects are repaired during infancy or childhood, people born with congenital heart problems need to be carefully followed during their entire lives because they are seldom “cured” by surgery and continue to have cardiac problems. They need lifelong follow-up of their cardiac and non cardiac issues.

At the Inova Heart and Vascular Institute, CVTSA surgeons participate in the Adult Congenital Heart Clinic which was one of the first programs in the country designed to care for this special patient population. Since 1994, a team of adult and pediatric physicians specializing in cardiology, electrophysiology and cardiac surgery have met twice a month to review patients and determine the best course of treatment for each individual.

Adults with congenital heart defects can experience numerous lifestyle challenges including:

• Marriage

• Contraception

• Pregnancy

• Genetic Risks

• Employment

• Life and Health Insurance

• Psychosocial Problems

• Drugs , ETOH, Smoking, Obesity, Exercise

In addition, they can experience medical problems including:

• Contraception

• Pregnancy (Genetic Counseling)

• Infective Endocarditis

• Arrythmias and Electrophysiology

• Non- Cardiac Aspects of Associated “Syndromes”

• Pulmonary Hypertension

• Non-Cardiac Surgery

Because of the medical and lifestyle challenges that go along with having a heart defect, patients benefit from the uniqueness of this program in several ways. First, because the doctors involved are both adult and pediatric physicians, they can work together to understand the anatomical condition and defect of the heart when the patient was a child and how it has changed now that the person is an adult. Second, because they meet as a group to review each case, they benefit from sharing ideas and past experiences as they create the best course of treatment for each patient. Finally, these doctors can work closely with doctors from other specialties to determine how best to handle other medical conditions that affect the heart, such as pregnancy and diabetes.

The following types of patients should be seen periodically at an Adult Congenital Heart Clinic:

• CHD of Moderate Severity or Group 2


• AV Septal Defects

• Coarctation of the Aorta


• VSD with associated defects

• Sub or supravalvar Stenosis(not HOCM)

• Severe Pulmonary Valve or RVOTO disease

• Ostium primum or Sinus Venosus ASD


• Ebstein’s Anomaly

• Aorto-LV fistulae

• Sinus of Valsalva Aneurysm

The following types of patients should be seen regularly at an Adult Congenital Heart Clinic:

• CHD of Great Complexity or Group 3

• All forms of cyanotic heart defects

• Fontan procedure

• Conduits

• Eisenmenger Syndrome

• Single Ventricle

• TGA and ccTGA

• Pulmonary Atresia

• Mitral Atresia

• Tricuspid Atresia

• Truncus

• Heterotaxy syndromes

Patients with the following defects can be cared for by the general medical community:

• Simple Congenital Heart Disease Group 1

• Isolated aortic and mitral valve disease

• Mild pulmonic stenosis

• Isolated PFO or small ASD

• Isolated small VSD

• Repaired PDA, ASD or VSD without residua

adult congenital, congenital


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