The Impact of Congenital Heart Defects

Luke smiling for the camera

Luke was born with tetralogy of Fallot.

A congenital heart defect (CHD) is a structural problem with the heart that’s present at birth. Such defects result when a mishap occurs during heart development soon after conception – often before the mother is aware that she is pregnant.

Such problems may or may not have a disruptive effect on a person’s circulatory system. But having a congenital heart defect can increase your risk of developing certain medical conditions.

Understanding how defects develop

To understand congenital heart defects, it’s helpful to remember how the heart is meant to function.

A normal heart has valves, arteries and chambers that circulate blood in a recurring pattern: body to heart, heart to lungs, lungs to heart and then heart out to the body. When all the chambers and valves work correctly, blood is pumped through the heart, to the lungs for oxygen, back to the heart and then throughout the body to deliver that oxygen. When valves, chambers, arteries and veins are malformed, this circulation pattern can be impaired.

Congenital heart defects range in severity from simple problems, such as “holes” between chambers of the heart, to very severe malformations, such as the complete absence of one or more chambers or valves.

Associated conditions

A congenital heart defect can increase your risk for certain medical conditions, including:

Congenital heart defects: FAQ

Are all heart problems in children congenital?

No, but most are. There are three general categories of possible childhood heart problems: structural defects, acquired damage and heart rhythm disturbances. These defects are usually, but not always, diagnosed early in life.

Children also can be born with or develop heart rate problems such as slow, fast or irregular heartbeats, known as “arrhythmias.”

Rarely, childhood heart problems are not present at birth. Instead, heart damage may occur during childhood due to infection. This type of heart disease is called “acquired.” Examples of such acquired problems include Kawasaki disease and rheumatic fever (PDF).

Who is at risk to have a child with a congenital heart defect?

Anyone can have a child with a congenital heart defect. Out of 1,000 births, at least eight 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 a heart defect may be higher.

Why do congenital heart defects occur?

Most of the time, the cause isn’t known. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to 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 heart defect?

Severe heart disorders generally become 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 during a routine medical checkup. Minor defects rarely cause symptoms. While most heart murmurs  in children are normal, some may be due to defects.

How well can people with congenital heart defects function?

Virtually all children with simple defects survive into adulthood. Although exercise capacity may be limited, most people lead normal or nearly normal lives.

With more complex problems, limitations are common. Some children with congenital heart defects have developmental delay or other learning difficulties.

What is the social/financial impact of congenital heart defects?

Successful treatment requires highly specialized care. Treatment for severe congenital heart defects requires extensive financial resources, including the costs associated with hospitalization.

Children with developmental delays also require community- and school-based resources to achieve their full potential.

What is the impact of congenital heart disease on families?

A serious congenital heart defect can put an enormous emotional and financial strain on young families at a vulnerable time.

Patient and family education is an important part of successful coping. Turn to our Support Network, where you can share concerns and gain insights within a community of care.