Getting your child to eat well

Nutrition Nutrition is very important for children who have heart defects. Getting your child to eat right can be a challenge. Children with congenital heart defects:

  • Often tire when eating, so they eat less and may not get enough calories. Feeding may take longer than you expect.
  • Tend to use more calories (have a higher metabolic rate) than other children.

To help overcome feeding difficulties or lack of weight gain:

  • Learn to recognize your baby’s first signs of hunger, such as fidgeting and sucking on a fist. This will help you to begin feeding before your baby starts to cry. Your baby will have more energy to eat well if he or she isn’t tired from crying.
  • Use a soft, special nipple made for babies born early (premature infants). These nipples make it is easier for your baby to get enough formula or breast milk if you bottle-feed.
  • Burp your baby often, especially when using a bottle. Babies who have trouble sucking take in large amounts of air when they eat, which makes them feel full before they get enough breast milk or formula.
  • Feed small, frequent meals. Smaller meals don’t require as much energy to eat or digest.

If you have difficulty preparing balanced meals, talk with a registered dietitian. Ask your doctor whether you should increase the number of calories in each meal.

Preventing infections

A congenital heart defect can raise the risk of an infection in the heart called endocarditis. To help prevent this infection, your child needs to take excellent care of his or her teeth throughout life. Good oral care can limit the growth of mouth bacteria that could get into the bloodstream and lead to infection. Call your child’s doctor if he or she has signs of a skin infection or infected wound.

Some children take antibiotics before having any dental and surgical procedures that could put bacteria or fungi into the blood. The antibiotics lower the risk of getting endocarditis.

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.

Helping with emotional issues

Children and teens with congenital heart defects may have self-esteem issues because of how they look. They may have scars from surgery, and they may be smaller, have clubbing, or have limits on how active they can be.

Children may feel alone and have trouble coping because they have to stay in the hospital often. Most children deal well with having a heart defect. But some children with serious heart defects may have a hard time feeling “normal.”

Taking care of yourself

Dealing with a lifelong and possibly life-threatening illness in your child can have a strong impact on your life as a parent. It can be hard to accept that your child has a serious illness. And it’s normal to worry about the effect the condition will have on your child’s future.

Try to take good care of your own physical and emotional healths. Doing so will help give you the energy needed to care for your child with special needs.

It might help to:

  • Learn all you canabout your child’s heart defect.
  • Stop blaming yourself.You didn’t cause the heart defect. Many things occurred for the defect to happen. No single factor causes congenital heart defects.
  • Allow yourself to grieveabout having a child with a heart defect.
  • Ask questions.Don’t expect to remember everything that is involved in caring for your child. Ask questions when you don’t understand. Ask your doctor for written directions on caring for your child. If directions are written, you can look at them later and call the doctor if you have questions.
  • Join a support group.It’s helpful to be in contact with organizations and people who can offer support and answer your questions. Talk with your health professional to see whether there is a local support group you might join. A support group is a good place to meet other parents who are dealing with similar issues.
  • Talk to a counselor.It’s normal to feel sad. You may grieve because your baby is not the perfectly healthy infant you imagined. If you or a family member continues to feel extremely sad, guilty, or depressed or is otherwise having trouble dealing with your child’s illness, talk with a doctor.
  • Get financial help if needed.Expenses can quickly multiply if your child’s heart defect requires several hospital stays and tests. You may qualify for help from organizations. Talk with your doctor about a referral to a social worker or financial counselor who can help you.

Family counseling

Coping with a child who has a lifelong illness impacts the entire family. If you feel that you or your family needs help dealing with the condition, talk with a health professional about counseling.



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