Care for Congenital Heart Defects

Information on congenial heart defects (CHD), including different types of congenital heart defects, diagnosis and treatment

Congenital heart defects are the most common birth defect. According to the American Heart Association, 40,000 babies are born with congenital heart defects in the United States each year. 

When children need treatment for congenital heart defects, the team in the Johns Hopkins All Children’s Heart Institute in St. Petersburg, Florida, provides comprehensive, compassionate care from fetal diagnosis through follow-up care into adulthood.

On this page:

  • What are congenital heart defects?
  • What causes congenital heart defects?
  • What are the different types of congenital heart defects?
  • How are congenital heart defects diagnosed?
  • What are the symptoms of a congenital heart defect?
  • How are congenital heart defects treated?
  • What kind of follow-up care is needed for children with congenital heart defects?

What are congenital heart defects (CHD)? 

A congenital heart defect (CHD) occurs when a baby’s heart doesn’t form normally while the baby is developing before birth. “Congenital” means present at birth so a congenital heart defect is one that a baby is born with.

The heart develops through a series of specific steps early in pregnancy. A heart defect can occur when one of these steps does not take place at the right time.

Congenital heart defects (CHD) may also be referred to as “congenital heart disease,” which is a general term that refers to the range of issues that can affect the heart. Congenital heart disease can include heart defects that affect the structure of the heart, or other problems like chest pain, inflammation of the heart, or infections of the heart, in which the structure of the heart is normal but the way the heart functions is affected. We treat all types of congenital heart disease in the Heart Institute.

What causes congenital heart defects? 

In most cases there is no known cause or clear reason why a baby has developed a heart defect. Some may occur more often in families, and some defects are known to be associated with certain genetic disorders like Down syndrome.

What are the different types of congenital heart defects?

There are many types of congenital heart defects, and while they are all different, certain defects share some similarities in the way they affect blood flow through the heart into the lungs or body.

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For more information on how the team in the Heart Institute at Johns Hopkins All Children's Hospital can help your child, please give us a call. Our expert team provides care to children of all ages with heart conditions.

How are congenital heart defects diagnosed? 

Congenital heart defects are often diagnosed before birth through a fetal echocardiogram. This is a type of ultrasound that is used to take pictures of an unborn baby’s heart and examine the heart’s structure, function and rhythm. The team in our Fetal Heart Program specializes in diagnosing congenital heart defects in babies before birth using fetal echocardiogram and providing clinical management before, during and after delivery.

Some heart defects may not be detected until after birth. Doctors may observe symptoms of a heart defect immediately after birth, such as a murmur or cyanosis. In some children with simple defects, they may not show symptoms or be diagnosed until they are older.

Depending on your child’s age and symptoms, the pediatric cardiologist may order certain tests to diagnose a congenital heart defect or obtain more information about your child’s condition. These tests can include:

What are the symptoms of a congenital heart defect?

For many babies, a congenital heart defect is detected and diagnosed before birth through a fetal echocardiogram.

When a heart defect is detected after birth, a baby may show symptoms such as:

  • Difficulty breathing
  • Low oxygen levels
  • Blueish color of the skin, lips or nails (called “cyanosis”)
  • Poor feeding and weight gain
  • Abnormal heart rate or rhythm
  • Abnormal sound of the heat (heart murmur)

In older children, symptoms may also include:

  • Shortness of breath
  • Chest pain with exertion
  • Poor weight gain
  • Syncope or fainting

How are congenital heart defects treated?

Treatment depends on the child’s individual condition. Some simple defects may just need to be monitored. Some conditions may be treated using medications. Cardiac catheterization is also used to treat some heart defects.

Other conditions will require surgery, in some cases within the first weeks or months of life. Complex conditions, such as single ventricle defects, will require multiple surgeries to repair the defect.

Your child’s pediatric cardiologist will work with you and your family to explain your child’s condition, and the treatment and follow-up care he or she will need.

What kind of follow-up care is needed for children with congenital heart defects?

After surgery to repair a congenital heart defect, patients will continue to follow with their pediatric cardiologist to ensure there are no changes to the repair as they grow. Your child’s follow-up visits will include individualized testing to monitor for any changes and adjust your child’s treatment plan as needed.

Due to advances in treatments, children with congenital heart defects are now living well into adulthood. Adults with congenital heart defects benefit from being seen by a specialized adult congenital cardiologist with expertise in how congenital issues impact a patient’s health throughout their life. For our teenage and young adult patients, we also provide a care transition program to help your child develop the skills needed to care for their health care as they enter adulthood. Learn more about our Adult Congenital Heart Disease Program.

Pediatric Cardiology at Johns Hopkins All Children's

Our board-certified pediatric cardiologists provide comprehensive care for children of all ages with congenital heart defects (CHD). Learn more about our programs and services.

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For more information or to make an appointment, give us a call at the phone number below. We serve families in the greater Tampa Bay area and beyond.

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