The Impact of Congenital Heart Disease

Luke was born with tetralogy of Fallot.

A congenital heart defect (CHD) is a structural difference in the heart or its major blood vessels that is present at birth. CHDs can happen when the heart does not develop normally during pregnancy, often before the mother knows she is pregnant.

Some CHDs may affect how blood flows through the heart and body, while others cause few or no problems. However, some people with congenital heart disease have an increased risk of developing other heart-related conditions over time.

Understanding how defects develop

To understand CHDs, it helps to know how a healthy heart works.

The heart’s valves, blood vessels and chambers work together to move blood through the body. Blood flows from the body to the heart, then to the lungs to pick up oxygen, back to the heart and out to the rest of the body. When parts of the heart or major blood vessels, such as the valves, chambers, arteries or veins, do not form typically, blood flow through the heart and body may be affected.

CHDs range from mild to severe. Some involve small openings between the heart’s chambers while others involve major problems, such as missing or undeveloped chambers or valves.

Conditions related to congenital heart defects

Depending on the type and severity of the defect, people with CHD may have an increased risk of other heart and health conditions, including:

• Pulmonary hypertension, which is high blood pressure in the blood vessels of the lungs. It can make it harder for the heart to pump blood efficiently.
• Arrhythmias, which are problems with the heart’s rate or rhythm. People with CHDs are more likely to develop abnormal heart rhythms.
• Infective endocarditis, an infection of the heart’s inner lining or valves
• Blood clots, which may require anticoagulation medication to help prevent complications
• Heart failure, a condition in which the heart cannot pump enough blood to meet the body’s needs. This can happen when the heart muscle is weak or when heart valves do not work properly.

Congenital heart defects FAQs

Are all heart problems in children congenital?

No. Heart problems in children can be congenital or develop after birth. They are often grouped into congenital heart defects, acquired heart disease and heart rhythm disorders. Some children may have more than one of these conditions.

Some of these conditions are diagnosed early in life, while others may not be identified until later.

Some children are born with heart rhythm problems, while others develop them later. These conditions, called arrhythmias, can cause the heart to beat too slowly, too quickly or irregularly.

Some heart problems develop after birth. This type of heart disease is called acquired heart disease and may result from illness or infection. Examples include Kawasaki disease and rheumatic fever.

Who is at risk of having a child with a congenital heart defect?

Anyone can have a child with a CHD. About 8 of every 1,000 babies are born with a CHD. Most defects are mild. Having a personal or family history of certain congenital heart defects may increase the chance of having a child with a CHD.

Why do congenital heart defects occur?

Doctors often do not know why CHDs occur. Genetic factors can play a role in some CHDs, but the causes of many CHDs are not fully understood.

Certain exposures during pregnancy, including some medications and infections, can increase the risk of CHDs.

How can I tell if my baby or child has a congenital heart defect?

Many severe CHDs are diagnosed before birth or soon after birth. Some babies may have signs or symptoms such as:

• Bluish or grayish skin, lips or nails
• Low blood pressure
• Difficulty breathing
• Feeding difficulties
• Poor weight gain

Milder defects are often found during a routine medical checkup and may not cause noticeable symptoms. Most heart murmurs in children are harmless, but some may be linked to a CHD.

How well do people with congenital heart defects function?

Most children with simple CHDs live into adulthood. Although some people may have limitations related to physical activity, or other aspects of health, many can lead active and fulfilling lives.

People with more complex CHDs may have a greater risk of health complications and may need ongoing specialized care. Some children with CHDs, particularly those with more complex diseases or other associated conditions, may have developmental, neurodevelopmental or learning difficulties.

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

Treating severe CHDs often requires specialized medical care and can be costly, including expenses related to hospital stays and ongoing treatment.

Some children with CHDs may also have developmental delays. They may need additional support through community and school programs to help them reach their full potential

What is the impact of congenital heart disease on families?

A serious congenital heart defect can place emotional and financial stress on families, especially during a child’s early years.

Education and support can help families cope with the challenges of living with a CHD. The American Heart Association Support Network, offers a place to connect with others, share experiences and find encouragement from a community of care.

View fact sheet: The Need for Lifelong Care for Adults with CHD (PDF)