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Congenital heart disease in adults

Dec 29, 2015 10:49AM ● By MED Magazine

By Kelly Steffen, DO


Over the past few decades, there’s been a revolution in treating congenital heart defects. Advances in diagnosis and surgery have made it possible to fix or repair most defects, even those once thought to be hopeless. Many people with these defects are now reaching adulthood and living full, active lives. According to the Centers for Disease control, there are about 1 million children and 1 million adults living with CHD.


The American College of Cardiology and the American Heart Association have developed standards for treating adults with congenital heart disease (ACHD). Experts in congenital heart disease are working to improve the health care system, so that teens and young adults have an easier time making the transition from receiving health care in pediatric cardiology centers to receiving care from specialists in adult cardiology.


It is recommended for the ACHD patient to receive regular follow-up visits at least every 1 to 2 years if they have moderate or complex CHD and every 6 to 12 months if they have very complex ACHD. Even if low-risk, simple CHD, they should be evaluated at least once, to determine if future follow-up is needed.


It is important to have the patient transition into seeing an adult congenital heart disease specialist to receive specific information and advice about health issues that are affected by your CHD, including:


●       Exercise and participation in sports

●       Preventive health habits for overall good health

●       Genetic testing and counseling

●       Safe and effective birth control, especially the need for some women with ACHD to avoid estrogen-containing birth control pills

●       Pregnancy, including the risk of premature delivery and low birth weight; risk to the baby from medications the mother needs to take, such as blood thinners; possible complications during pregnancy and delivery; and importance of preventing blood clots during and after delivery.

●       Patients with CHD face an increased risk for getting an infection that can spread to the lining of the heart and heart valves—infective endocarditis (IE).

●       It’s not uncommon for adults with CHD to have an irregular heart rhythm (arrhythmia), which is caused by problems in the heart’s electrical system.


To raise awareness about the number one heart defect the American Heart Association is handing out knitted red hats to every baby born in the month of February at participating hospitals, including all Sanford facilities.