Adult Congenital Heart Disease FAQs

Q: What is congenital heart disease?

A: A congenital heart defect is an abnormality in the heart, heart valve, or great vessels that is present at birth. Some defects affect the function of the heart muscle, others affect the heart's rhythm, and some cause blood to be poorly oxygenated or to flow improperly.

Q: What causes congenital heart disease?

A: Congenital heart disease may be caused by genetic defects, environmental exposure, or the cause may be unknown.

Q: What is adult congenital heart disease?

A: As they mature, the hearts of children with congenital heart disease have unique anatomy and can progress in unique ways. Having had open heart repairs as children, they often require additional procedures in adulthood, such as valve surgeries or Fontan conversions. Because adults with congenital heart disease have unique anatomy and complications that are unfamiliar to many cardiologists and surgeons, it is essential for anyone with a moderate to severe congenital heart defect, or who has had heart surgery as a child, to seek the care of experts who specialize in adult congenital heart defects.

Q: Is adult congenital heart disease something new?

A: Beginning in the 1980's, surgeons began to achieve wide success in repairing more complex congenital heart defects for the first time. Advances in treatment allowed more children with complex defects to live longer and more normal lives than ever before. As a result, the first generation of adults with congenital heart disease is now thriving — a brand new population that did not exist in large numbers until today.

Q: How common is adult congenital heart disease?

A: More than a million adults in the U.S. will be living with repaired heart defects in the next few years. By the year 2020, it is expected that more adults than children will need open heart procedures to correct congenital heart defects.

Q: What are the most common heart defects in children?

A: The most common include ventricular septal defect, atrial septal defect, and Tetralogy of Fallot.

Q: I had surgery for a heart defect as a child. Should my child be evaluated?

A: Both you and your child should be evaluated. Although you had a successful repair for your condition, unique issues arise can in the decades after surgery. It is recommended that you consult the specialists at the Adult Congenital Heart Center to be sure that no problems are developing.

Q: What is cardiomyopathy?

A: Cardiomyopathy is a chronic disease in which the heart muscle is abnormally enlarged, thickened, or stiffened. The heart cannot contract or relax normally, and as a result, it loses its ability to pump blood properly through the body. There are five main types of cardiomyopathy; of these, hypertrophic cardiomyopathy is the most common genetic heart abnormality.

Q: How are congenital heart defects treated?

A: Some patients can be treated with a catheter-based procedure; for others, it could mean medications, arrhythmia therapy, surgery, or in the most advanced cases, heart transplantation. For others, a combination of several approaches may be required to treat more than one issue, such as a valve problem and an abnormal rhythm.

Q: Can women with congenital heart disease become pregnant?

A: Although many cardiologists will advise women with congenital heart disease not to become pregnant, a careful evaluation by a specialist in adult congenital heart disease can help patients to know whether pregnancy will be safe for them, or it may guide them about how to prepare for pregnancy by addressing any significant issues.

Q: Should adults who had heart repairs as children be evaluated even if they have no symptoms and feel fine?

A: Consequences of early heart repairs often develop slowly and without symptoms, so patients are often unaware that a problem may exist. In order to preserve heart function and decrease arrhythmias, it is important to be evaluated during adulthood even in the absence of symptoms. By the time symptoms appear in adults with congenital heart disease, it may be too late to treat the condition optimally.

Q: My child has a congenital heart defect; what is the risk of having another child with congenital heart disease?

A: Our geneticist will work with your family to take a complete family history (pedigree) and do a thorough assessment of your child's condition including physical examination and genetic analysis. Based on these findings, she will be able to provide guidance about the risk to future pregnancies.

Next Steps

Our surgeons are known for treating the most complex congenital heart defects,and have special expertise in caring for adults with congenital heart disease as part of one of the largest and most experienced adult congenital heart programs in the world, the Schneeweiss Adult Congenital Heart Center.

If you have heart disease and need help, we’re here for you. To get started today, call (212) 305-2633 or use our appointment request form.

Heart Surgery Guides: What to Expect