If you are having any symptoms or have any questions, please call 811 to speak with a registered nurse 24 hours a day.

OVERVIEW

What is congenital heart disease?

Congenital heart disease is a problem with the heart that is present at birth. “Congenital” is just another way of saying that your baby was born with it. “Congenital heart defect” is another term for congenital heart disease.

Congenital heart problems can be simple or complex. The symptoms and the treatment depend on the type of heart problem. Many people who have a congenital heart defect grow up to be healthy and strong.

SYMPTOMS

What are the symptoms of congenital heart disease?

The symptoms depend on the type of heart problem. Many people have no symptoms.

Serious congenital heart problems may cause one or more of 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 healthcare provider listens to the heart)

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

• Heart murmur
• Shortness of breath
• Fatigue during exercise

CAUSES & RISK FACTORS

What causes congenital heart disease?

Healthcare providers don’t always know what caused a congenital heart problem. Some risk factors for congenital heart problems include:

• Family history: The risk of having a child with congenital heart problems is higher if a parent or sibling has a congenital heart problem.
• Genetic disorder: Certain genetic disorders, such as Down syndrome, increase the risk of congenital heart problems.
• Infection: Certain infections during pregnancy, such as rubella, may increase the risk of having a baby with congenital heart problems.

Did I do something during pregnancy that made my baby have this problem?

It’s normal to worry that something you did could have caused the problem, but most of the time healthcare providers don’t know what caused it. Talk with your family healthcare provider if you wonder if you may have caused your baby’s heart problem, but don’t blame yourself.

DIAGNOSIS & TESTS

How is congenital heart disease diagnosed?

Severe heart problems usually are diagnosed during pregnancy during an ultrasound test or right after the baby is born.

Less severe heart problems may not be found until the child is older, or even in adulthood.

What about tests?

Several tests can show what kind of heart disease your baby has. Tests can also help your healthcare provider see how well the heart is working. Here are some tests your baby might have:

• ECG (short for “electrocardiogram”): An ECG shows the heartbeat as a line tracing. It measures electrical activity in the heart.
• Pulse oximetry: This test shows how much oxygen is in the baby’s blood.
• Echocardiogram: This test gives the healthcare provider an ultrasound “picture” of the baby’s heart.
• Chest X-ray: This can show how well the heart is growing and if your baby’s lungs have fluid in them.
• Cardiac catheterization: This test uses dye in the heart to give the healthcare provider a clear picture of the heart problem.

TREATMENT

What is the treatment for congenital heart disease?

The 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 healthcare provider will talk to you about your treatment options, or the treatment options for your child.

If your baby needs medicine, it’s very important to give the medicine just the way your healthcare provider tells you to. Try not to skip a dose. If you do forget a dose, contact your healthcare provider to find out if you should give an extra dose.

If your baby needs surgery, your baby will probably stay in a newborn intensive care unit (NICU) for a few days after the surgery, so healthcare providers can keep a close watch. Tubes and machines keep track of your child’s condition. They don’t cause any pain. Many children are back to normal just a few days after heart surgery.

COMPLICATIONS

Can congenital heart disease cause other problems?

Some people who have congenital heart problems are at a higher risk for other heart problems, including the following:

• Endocarditis: An infection of the heart valves or the lining of the heart chambers
• Pulmonary hypertension: An increase in the blood pressure going to the lungs.
• Arrhythmia: A heart beat that is too fast or too slow, or skips a beat
• Congestive heart failure: A heart that doesn’t pump blood as well as it should, causing fluid to build up in the lungs or body

QUESTIONS TO ASK YOUR HEALTHCARE PROVIDER

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

FOR MORE INFORMATION

Canadian Heart and Stroke Foundation Website at:
http://www.heartandstroke.ca/

Braveheart Support Society
http://www.braveheartsupport.ca/

Sources

Caring for Infants with Congenital Heart Disease and Their Families by RB Saenz, M.D., DK Beebe, M.D., and LC Triplett, M.D. (04/01/99, http://www.aafp.org/afp/990401ap/1857.html )