My Child Has a Congenital Heart Defect

The word “congenital” means the heart defect existed at your child’s birth. Your child’s heart problem is not a “disease” but rather a defect or abnormality. A heart defect occurs when the heart, or blood vessels near the heart, don’t develop properly before birth.

Sometimes there aren’t outward symptoms, because the defect is mild. In other cases, it’s so severe that the newborn becomes ill soon after birth. Also, signs and symptoms may develop later in childhood, as the child gets older.

What is the Cause a Congenital Heart Defect?

Congenital heart defects do not occur in a majority of children, but when they do occur there often is not a known cause. Sometimes a problem can happen when the baby is still developing in their mother’s uterus, during the formation and growth of the heart. There are some ties to congenital heart defects and genetics. Several genetic syndromes, such as down and noonan syndromes, have cardiac malformations.

Environmental exposures to the mother early in pregnancy can also be associated with congenital heart defects including:

• Some medications for seizures, acne or bipolar psychiatric disorder
• Having viral diseases, such as rubella (German measles), phenylketonuria and diabetes
• Exposure to certain chemicals
• Alcohol abuse and drug use

Fetal echocardiograms may help detect problems as early as mid-pregnancy.

What Does This Mean For Your Child?

Congenital heart defects were once thought hopeless. However today, if your child is born with a heart defect, the chances are better than ever that the defect can be overcome and that your child can lead a normal adult life.

• More than 1.3 million Americans alive today have some form of congenital heart defect, and about one-half of these individuals are less than 25 years of age.
• At least nine of every 1,000 infants born each year have a heart defect, totaling almost one percent of live-born infants.
• In the U.S., about 36,000 children are born with a heart defect each year.

Recent scientific progress in diagnosis and treatment of heart defects, such as interventional cardiac catheterization and cardiac surgery, have improved success rates to correct most defects. As technology, research and science advance, more progress on treatments will be made. Most children can be helped by surgery even if the defect is severe.