Congenital Heart Defects in Children Fact Sheet
Summary adapted from American Heart Association.
What is a congenital heart defect?
Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
Is all heart disease in children congenital?
No, but most is. These defects are usually but not always diagnosed early in life. Rarely, heart disease is not congenital but may occur during childhood such as heart damage due to infection. This type of heart disease is called acquired; examples include Kawasaki disease and rheumatic fever. Children also can be born with or develop heart rate problems such as slow, fast, or irregular heart beats, known as "arrhythmias".
Who is at risk to have a child with a congenital heart
Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
How many people in the United States have a congenital
Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.
Why do congenital heart defects occur?
Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
How can I tell if my baby or child has a congenital
Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.
How serious is the problem?
Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined.
Are things improving?
Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.
How well can people with congenital heart defects
Virtually all children with simple defects survive into adulthood. Although exercise capacity may be limited, most people lead normal or nearly normal lives. For more complex lesions, limitations are common. Some children with congenital heart disease have developmental delay or other learning difficulties.
What is the social/financial impact of congenital
Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. Children with developmental delay also require community and school-based resources to achieve optimum functioning.
What is the impact of congenital heart disease on
The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Patient/family education is an important part of successful coping.
How much research has been done?
Not nearly enough. Compared to adult acquired heart disease, less information is known regarding optimal treatments and outcomes for most congenital heart defects. Although nearly twice as many children die each year from congenital heart disease compared with childhood cancers, funding for pediatric cancer research is 5 times higher than for congenital heart disease.
Where can I get additional information?
Additional information can be obtained from the American Heart Association. You can reach them by calling 1-800-AHA-USA1 (1-800-242-8721) or via the internet at www.americanheart.org/children.
© 2000 American Heart Association, Inc. All rights reserved. Unauthorized use prohibited.
The information contained in this American Heart Association (AHA) fact sheet is not a substitute for medical advice or treatment, and the AHA recommends consultation with your doctor or health care professional.