An Introduction to Congenital Heart Defects

An estimated 2.4 million American children and adults are currently living with congenital heart defects (CHDs). Learn more about different types of CHDs, causes and treatment options.

Learning that your child has a CHD can be a scary and overwhelming experience, but it’s important to know that you’re not alone. Nearly 40,000 infants in the U.S. are born each year with CHDs, and there are a variety of resources available to help, including experienced specialists, clinically-proven treatment options and support groups (both online and in-person).

When it comes to CHDs, knowledge is power. By learning as much as you can about your child’s diagnosis and treatment options, you’ll not only ensure that he or she gets the best care possible — you may also help relieve some of the fear and stress that can accompany a CHD diagnosis.

This article is intended to provide a general overview of CHDs, as well as additional resources from established, reputable organizations and websites for those seeking more in-depth information.

What is a CHD?

A congenital heart defect (CHD) is a structural defect of the heart that is present at birth and may change or impede normal blood flow. A CHD occurs when the heart or the blood vessels near the heart fail to develop properly before birth. Common examples include holes in the walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed and/or in the wrong place.

The good news is that recent advancements in diagnostics and treatment options have helped many children with CHDs survive into adulthood, with more than 85% of babies born with CHDs now living to at least age 18. However, CHD is a lifelong issue, even for those who were treated as children.

Causes

CHD occurs when the heart does not develop normally while the baby is growing in the womb during the first eight or so weeks of pregnancy. Mothers will sometimes wonder whether something they did or didn’t do during their pregnancies led to the problem, but most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.

Types of CHDs

There are many different types of CHDs, ranging from simple to complex to critical. Some simpler forms of CHDs may have no symptoms and require no treatment, whereas more serious and complex defects may have severe or life-threatening symptoms that require medical or surgical intervention.

Click the links below to learn more about a specific condition:

Treatment Options

Depending on the severity of the CHD, treatment options include medicines, implantable heart devices such as a pacemaker or implantable cardioverter-defibrillator (ICD), catheterization procedures and, in more severe cases, cardiac surgery to make repairs and/or replacements. Surgeries that are sometimes required to treat critical defects and CHD-related heart failure include:

While some forms of CHD may not require treatment at all, children with critical defects will typically require surgery within the first year of their lives. Some patients will need treatment — including additional surgeries — throughout their lives. Importantly, all people with CHDs should be closely monitored by a cardiologist (heart specialist) throughout their lifetimes.

For patients who advance to end-stage congenital heart disease affecting both sides of the heart, the SynCardia temporary Total Artificial Heart (TAH) has been used as a bridge to heart transplant. Read Jordan’s story and Jaheim’s story to learn more.

More Information

For in-depth information about CHDs, associated conditions, treatment options and more, refer to the websites and resources listed below: