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Congenital Heart Disease in Children: Care Instructions


Congenital heart disease refers to heart problems a baby is born with. There are different types of problems. The heart may have a hole between two of its chambers. Blood may not flow the right way because of a problem with a blood vessel. Sometimes, a heart valve may not form correctly. Or, a heart valve or a chamber may not have formed at all.

These heart problems are usually diagnosed at or before birth. But some cases of mild heart problems are diagnosed when a child is older.

It can be scary and stressful to know that your child has a heart problem. But a procedure or surgery can repair many of these problems. Sometimes, a problem gets better on its own as a baby grows. If a problem is very serious, a child could have surgery soon after diagnosis. In deciding about treatment, your doctor will look at your child's age and size, the type of problem your child has, and their overall health.

Follow-up care is a key part of your child's treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if your child is having problems. It's also a good idea to know your child's test results and keep a list of the medicines your child takes.

How can you care for your child at home?

  • Have your child take medicines exactly as prescribed. Call your doctor or nurse advice line if you think your child is having a problem with a medicine.
  • If your child has trouble eating, work with a registered dietitian. Some children may have a hard time eating and getting enough calories.
  • Make sure that your child gets all the recommended vaccines, which helps keep your child healthy. Make sure family members and people who are in close contact with your child also get recommended vaccines.
  • Congenital heart disease can increase your child's risk of an infection in the heart. Talk to your doctor about your child's risk. Your child may need to take antibiotics before certain dental or surgical procedures to prevent infection. Also be sure your child takes good care of their teeth and gums.
  • Ask for support. Your child's care team can help you and your child. They can refer you to a counsellor. They can also give you information for support groups of parents who have children with congenital heart disease.
  • Learn how to do CPR and rescue breathing. It is important to know this in case your child stops breathing.
  • Learn what to do if your child has "blue spells." These may happen if the blood going from the heart to the body is a mix of oxygen-poor and oxygen-rich blood. The body may not get enough oxygen. When this occurs, a child can have a bluish tint to the skin, lips, or fingernails. Tell your child's doctor when a blue spell occurs.

When should you call for help?

Call 911 anytime you think your child may need emergency care. For example, call if:

  • Your child passes out (loses consciousness).
  • Your child has severe trouble breathing. Signs may include:
    • Your child turns blue.
    • Your child stops breathing.

Call your doctor or nurse advice line now or seek immediate medical care if:

  • Your child has difficulty breathing.
  • Your child has difficulty feeding.
  • Your child has a fever.
  • There is a blue tint to your child's skin, lips, or fingernails.
  • Your child has swelling in the belly, legs, ankles, or feet.

Watch closely for changes in your child's health, and be sure to contact your doctor or nurse advice line if:

  • Your child is not gaining weight.
  • Your child has less energy or is sleeping more than usual.

Where can you learn more?

Go to

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Care instructions adapted under license by your healthcare professional. If you have questions about a medical condition or this instruction, always ask your healthcare professional. Healthwise, Incorporated disclaims any warranty or liability for your use of this information.