Congenital Heart Disease

Last Updated April 2022 | This article was created by editorial staff and reviewed by Beth Oller, MD

What is congenital heart disease?

Congenital heart disease is a problem with the heart that is present at birth. “Congenital” is another way of saying your baby was born with it. It means the heart developed with an abnormality or weakness. The condition can be fatal.

Congenital heart problems are the most common kind of birth defect. They can be simple or complex. They could include:

  • Heart valve defects
  • A hole in the heart
  • Defects in one of the chambers
  • Heart muscle abnormalities

Symptoms of congenital heart disease

The symptoms depend on the type of problem. Some heart problems cause symptoms right away. Others cause symptoms as the child gets older. Sometimes there are never any symptoms. Many babies who have a congenital heart defect grow up to be healthy and strong.

Serious congenital heart defects may cause the following symptoms in newborns:

  • Fast breathing
  • A blue color to the skin, lips, and fingernails
  • Fatigue or poor feeding
  • Heart murmur (an extra sound heard when a doctor listens to the heart)

In older children or adults, congenital heart problems may cause symptoms such as:

What causes congenital heart disease?

Doctors don’t always know what causes a congenital heart defect. Some risk factors for congenital heart defects include:

  • A family history of congenital heart problems
  • Certain genetic disorders, such as Down syndrome
  • Certain infections during pregnancy, such as rubella
  • Some medicines, chemicals, and alcohol

Heart problems have also been found in babies of women with diabetes who don’t control their blood sugar during pregnancy.

How is congenital heart disease diagnosed?

Severe heart problems can be diagnosed during pregnancy with an ultrasound test. Sometimes, the problem is diagnosed right after the baby is born. Less severe heart problems may not be found until the child is older or even in adulthood.

Several tests can show what kind of heart disease your baby may have. They also help your doctor see how well the heart is working. A doctor will order tests if he or she suspects a congenital heart defect, or if your baby has a high risk factor. Here are some tests your baby might have:

  • An ECG or EKG (electrocardiogram) measures electrical activity in the heart.
  • Pulse oximetry shows how much oxygen is in the baby’s blood.
  • A fetal ultrasound gives the doctor an ultrasound picture of the baby’s heart.
  • A Chest X-ray shows how well the heart is growing and if your baby’s lungs have fluid in them.
  • Cardiac catheterization uses dye in the heart to give the doctor a clear picture of the problem.
  • Cardiovascular MRI is becoming more popular because it produces better pictures than other methods.

Can congenital heart disease be prevented or avoided?

In many cases, there’s nothing you can do to prevent congenital heart disease. But there are steps you can take to protect yourself and your baby.

  • Tell your doctor if you’re pregnant before taking any medicines.
  • Ask your doctor what types of chemicals or substances could be harmful to your baby.
  • If you have diabetes or gestational diabetes, get your blood sugar under control.
  • Get a blood test early in your pregnancy to see if you are immune to rubella. If you’re not, get vaccinated right after delivery.

Congenital heart disease treatment

Treatment depends on the heart problem and how severe it is. Some people don’t need any treatment. Other heart problems need treatment with medicine, procedures, or surgery. Your doctor will talk to you about treatment options for you or your child.

Many babies with heart disease need medicine to make their heart stronger or to prevent other problems. It’s very important to give the medicine exactly as your doctor tells you.

Some babies need to have surgery. Some heart problems must be fixed as soon as the baby is born. Other problems can wait until the child is older. Sometimes the repair takes more than one operation. After surgery, your baby will probably stay in a neonatal intensive care unit (NICU) for a few days. There the doctors and nurses can keep a close watch. Many children are back to normal just a few days after heart surgery.

Living with congenital heart disease

Babies with heart disease may get tired easily while they’re feeding. Try giving smaller amounts of milk at one time. Then feed your baby more often. He or she may need more food because a heart defect makes the heart work harder. This makes your baby burn more calories—just like you burn more calories when you exercise.

Can congenital heart disease cause other problems?

Some people with congenital heart problems are at a higher risk for other heart problems, including:

  • Bacterial endocarditis. This is an infection of the heart valves or the lining of the heart chambers.
  • Pulmonary hypertension. This is an increase in blood pressure going to the lungs.
  • Arrhythmia. This is a heartbeat that’s too fast or too slow or skips a beat.
  • Congestive heart failure. This is when a heart doesn’t pump blood like it should. This causes fluid to build up in the lungs or body.

Even if the problem is fixed, your child will need to be monitored for heart problems for the rest of his or her life.

Coping with your child’s heart problem

Caring for a baby or child with a heart problem can be emotional and stressful. You need all the information and support you can get. Connect with parents of other children with a heart problem. They understand what you’re going through and can share coping skills. Your child’s doctor can help connect you with support groups. Talk to a counselor if you’re having trouble coping. He or she can help you reduce stress, anxiety, and depression.

Questions to ask your doctor

  • What kind of heart problem does my child have?
  • What’s the likely cause of my child’s heart problem?
  • What kind of treatment does my child need?
  • What are the risks associated with the treatment?
  • What is the recovery time for this treatment?
  • What are some signs my child’s condition is getting worse?
  • Is my child at risk for long-term health problems?