updated 1/23/2006 5:53:49 PM ET 2006-01-23T22:53:49

Most babies born with heart defects now survive and thrive thanks to advances in cardiac surgery. But as the first large wave of these patients reaches adulthood, doctors are learning that some heart repairs don't last into middle age, or the childhood surgeries themselves may trigger problems later in life.

More research is needed, but specialists and patient advocates have some advice for adults with congenital heart disease:

  • There are 35 different congenital heart defects, abnormalities in the heart's structure that make it hard for blood to pump through the lungs properly to get oxygen, or to pump into the rest of the body. How the defects are repaired can vary widely by hospital. Learn the name of your defect and the name of the surgical repair you received, and be able to describe both clearly to doctors not familiar with your history.
  • Get regular heart checkups. Patients with minor defects, such as holes between heart chambers that were patched, may do fine with a general physician. Patients with more complex defects may need special care, including additional surgeries, and should be evaluated at least every few years by a cardiologist trained in congenital heart disease.
  • There is a shortage of specialists in adult congenital heart disease. Ask your pediatric cardiologist or the hospital that performed your childhood surgery for recommendations for adult care.
  • Heart defects increase the risk for endocarditis, a dangerous heart infection. The main symptom is an unexplained fever lasting five days or more. Some precautions, such as taking antibiotics before dental work, minimize the risk.
  • Don't dismiss subtle symptoms such as shortness of breath. Special tests may be needed to tell if you just need more exercise, or are developing a life-threatening complication from the heart defect.
  • Women with certain heart defects should consult a cardiologist before attempting to become pregnant. They may need special care to withstand the cardiac strain pregnancy causes; some may not be well enough to try. Also, certain defects can be inherited, requiring special fetal ultrasound exams to tell if the baby will need cardiac care upon delivery.

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