Congenital heart disease: Don't overlook condition as an adult

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Congenital heart disease: Don't overlook condition as an adult

Congenital heart disease in adults: Learn about adult congenital heart disease care and treatments.

Congenital heart disease, once almost a guaranteed death sentence for babies born with heart defects, is far more treatable today than in the past. Although congenital heart disease is often considered a childhood disease, advances in surgical treatment mean most babies who once died of congenital heart disease are surviving well into adulthood. Some researchers estimate there are more adults than children living today with congenital heart disease.

Nearly 2 million adults and children in the United States have some form of congenital heart disease. Congenital heart disease is the most common form of birth defect, affecting about one out of every 100 babies. As treatments continue to improve, it's likely the number of adults with congenital heart disease will steadily rise.

While medical advances have improved, many adults with congenital heart disease may not be getting proper follow-up care. If you had a congenital heart defect repaired as an infant, don't consider yourself out of the woods. Learn if and when you should check with your doctor, if you're likely to have complications or if you're at greater risk of other heart problems as an adult.

Congenital heart disease rarely cured

One of the biggest myths many adults with congenital heart disease have is they no longer have to worry about congenital heart disease. Many think they've either outgrown their condition or that treatment they had as a child cured them. But this is rarely true.

If you have congenital heart disease, even if you've had surgery as a child, you're not cured. This doesn't mean you face a lifetime of problems. However, it does mean you're at increased risk of developing complications, such as infections of the heart (endocarditis) or dangerous abnormal heart rhythms. Some problems might require surgical treatment as you get older.

Follow-up care for congenital heart disease is essential

If you had your congenital heart defect or congenital heart disease treated as a child, it's important to have lifelong follow-up care, especially if you had corrective heart surgery. This follow-up care could be as simple as having periodic checkups with your doctor, or it may involve more comprehensive testing. The important thing is to discuss your care plan and make sure you follow all recommendations.

Ideally, your care will be done by cardiologists trained in following adults with congenital heart defects. This may be a challenge for some because there's currently a shortage of cardiologists with such expertise, as well as a limited number of centers that specialize in following adults with congenital heart disease.

Congenital heart disease treatment as an adult

There's a wide variation in the types and severity of congenital heart disease. Your doctor may suggest a treatment to attempt to correct the heart defect itself, or treat complications caused by the defect.

Relatively minor heart defects may require only periodic checkups with your doctor. Other types of congenital heart disease can worsen in adulthood, even if corrective surgery was done while you were a child. In these cases, medication or repeat surgery may be needed. Some procedures can now be done less invasively with the use of catheters. If you do have surgery or other forms of treatment, you'll still need long-term follow-up care or monitoring.

Taking care of yourself if you have congenital heart disease

One important thing to do if you're an adult with congenital heart disease is to become educated about your condition. Topics you should become familiar with include:

  • The name and details of your heart condition and its past treatment
  • How often you should be seen for follow-up care
  • Information about your medications and their side effects
  • How to prevent heart infections (endocarditis)
  • Exercise guidelines and any work restrictions
  • Birth control and family planning information
  • Health insurance information and coverage options
  • Dental care information, including whether you need antibiotics before dental procedures
  • Symptoms of your congenital heart disease and when you should contact your doctor

Each person with congenital heart disease has a different set of risks and concerns, so it's hard to generalize what's best for you. This is why it's so important to have regular communication with your doctor to discuss self-care options, including what activities you can do safely or what you should avoid. Thousands of adults with congenital heart disease lead full, long and productive lives. But it's important not to ignore your condition. Become informed about your disease; the more you know, the better you'll do.

Last Updated: 05/14/2007
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