Congenital Heart Defects in Children: Care Instructions

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Your Care Instructions

The heart

Congenital heart defects are 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 is scary and stressful to know that your child has a heart defect. But surgery can fix many of these problems. Sometimes, a defect gets better on its own as a baby grows. If a defect is very serious, a child could have surgery soon after diagnosis. In other cases, the doctor may wait until the child is stronger. In deciding about treatment, your doctor will look at your child's age and size, the type of defect your child has, and his or her 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 call line 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 call line if you think your child is having a problem with his or her medicine.
  • 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. If this happens:
    • Try to calm your child. This is the most important thing you can do.
    • Place your child with the knees to his or her chest-either on the back with the knees drawn up to the chest or in a sitting position with the chest to the knees.
    • You may need to give your child oxygen if the spells are very bad and do not get better with a change in position. You give oxygen through a small tube placed in the nostrils. Your doctor will tell you how much to give.
    • Note when the spells occur and plan activities to try to reduce the spells.
    • Try to prevent blue spells by keeping your child warm, limiting activity, and giving your child small, frequent meals.
    • Tell your child's doctor when a blue spell occurs.
  • Help your child eat well. This can be hard for children who have a heart defect. They may get tired when eating, so they may eat less and may not get enough calories.
    • Note your baby's first signs of hunger, such as fidgeting and sucking on a fist. Your baby will have more energy to eat well if he or she is not tired from crying.
    • Try to use a soft, special nipple made for babies born early. These nipples make it easier for your baby to get enough formula or breast milk if you bottle-feed.
    • Burp your baby a lot, especially when using a bottle. Babies who have trouble sucking take in large amounts of air when they eat. This can make them feel full before they get enough formula or breast milk.
    • To help an older child eat enough, give small, frequent meals. Smaller meals do not require as much energy to eat or digest.
  • Get support for you and your child. It is normal to feel sad while your child is ill. If you or a family member feels extremely sad for a long time or feels guilty or depressed, talk with your doctor. Counseling may help. It also may help to join a support group of parents who have children with health problems. A school-age child who has a heart defect also may need support. It can be hard for a child with a long-term illness to feel normal, especially if he or she cannot do sports or other activities with friends.
  • Learn how to do CPR and rescue breathing. It is important to know this in case your child stops breathing. To find a CPR course near you, call your local hospital or the local branch of the Red Cross.

When should you call for help?

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

  • Your child stops breathing, turns blue, or becomes unconscious. Follow the instructions given by emergency services while you wait for help.
  • Your child has severe trouble breathing. Signs may include the chest sinking in, using belly muscles to breathe, or nostrils flaring while your child is struggling to breathe.
  • Your child passes out (loses consciousness).
  • Your child has a seizure.

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

  • Your child has a bluish tint to the skin, lips, and nails that gets worse in a short time.
  • Your child has a fever that does not go away. This could be a symptom of endocarditis, which is an infection of the lining of the heart valves and chambers.
  • Your child has fewer wet diapers and has puffy eyes, hands, and feet.

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

  • Your child has any trouble breathing.
  • Your child is not eating well or has a fast heartbeat or fast breathing while eating.
  • Your child has less energy or seems to be sleeping more than usual.
  • Your child has sudden weight gain or is not gaining weight.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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