What to Know About Congenital Heart Defects

Kids born with heart defects can lead normal lives, thanks to modern surgical practices -- here's what you need to know.

The Realization of a Problem

Male doctor looking down, female medical professional in back

Heather Schenck, of Lowell, Massachusetts, watched warily as a delivery nurse held a stethoscope to her newborn's heart. "The nurse kept listening and listening," she says. What she heard was a heart murmur, a serious-sounding problem, but one that posed no danger -- at least according to the delivery-room staff.

Then during a well-baby visit two months later, Chelmsford, Massachusetts, pediatrician Sheila Morehouse, MD, again heard a murmur in Schenck's daughter, Hayden. "It had a 'blowy,' more continuous sound," Dr. Morehouse explains. Concerned about what she heard, Dr. Morehouse referred the Schencks to a cardiologist, who diagnosed Hayden with a defect in the heart's atrial ventricular canal. At 7 months, Hayden underwent open-heart surgery to close a hole between the chambers of the heart and correct a valve problem.

Not only were the Schencks shocked to learn that their baby had heart trouble, but they were surprised to hear that heart problems aren't rare in babies, although not all require surgery. In fact, congenital heart defects (CHDs) are the most common birth defects, affecting as many as 6 to 8 in every 1,000 babies.

The Earliest Clues

For most parents who hear the frightening phrase "heart murmur," the case is harmless. But every now and then, especially in a newborn, the sound produced as blood moves through the heart has a tone, intensity, or location that signals a true congenital heart defect -- an abnormality present at birth. The good news for parents of a baby with a CHD is that most of these defects can be corrected, usually with surgery. "It's now unusual to say that a CHD is untreatable," says Ronald Lacro, MD, an associate in cardiology at Children's Hospital Boston.

By eight weeks' gestation, the heart is fully formed, with four chambers, four valves, two walls, and an array of arteries and vessels -- a complex system with plenty of room for error. "There are probably more than 100 different defects," says Jack Rychik, MD, director of the fetal heart program at The Children's Hospital of Philadelphia. Among them: holes in the heart, including failure of the ductus arteriosus (an open blood vessel) to close after birth; narrowed valves; and reversed blood vessels. Most babies do well as long as the problem is caught before 6 months, says Dr. Rychik; many defects correct on their own or need only a single repair. The most complex defects -- those that require more than one operation or procedure -- are the least common.

Not all defects are revealed in a murmur; other signs include rapid breathing or panting, trouble with feeding, or "blue baby" -- a bluish tinge around the mouth and nose that indicates a lack of oxygen, medically known as cyanosis. "Don't miss that first well visit at 2 weeks, because symptoms could arise after you and your newborn have been discharged," says Catherine Webb, MD, of the American Heart Association. Call your doctor immediately if your baby vigorously sucks for only a couple of minutes or gets a sweaty head while taking the breast or bottle -- a sign of true fatigue, as opposed to the usual newborn sleepiness. Also be on the alert for slow growth, a sign that too many calories are going toward keeping the heart pumping, says Dr. Webb.

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