Overview

Caring for a child who has congenital heart disease can be challenging. But there are things you can do to make sure that your child is as healthy and comfortable as possible, whether they are at home or in the hospital. And while you're taking care of your child, remember that it's important to take care of yourself too.

At home, care focuses on:

• Helping your child eat enough.
• Giving medicines.
• Preventing infections.
• Helping your child be active.
• Helping your child have a good quality of life.

It may be hard to get your child to eat enough. There can be many different reasons for this. For example, some children may get tired while eating, so they may eat less.

Heart medicines can be very strong. They can be dangerous if they aren't given the right way. Follow any instructions for giving medicines exactly as prescribed. Ask your doctor or pharmacist if you're not sure about how much medicine to give and how to give it.

To prevent infections, make sure that your child gets the recommended childhood vaccines. To prevent an infection in the heart, be sure your child takes good care of their teeth and gums. And your child may need antibiotics before certain dental procedures to help prevent a heart infection.

Most children can exercise without limitations. Your child's doctor will let you know if your child needs to avoid certain types of activities.

If your child needs oxygen at home, your child's doctor will prescribe the amount your child needs. Learn about the oxygen equipment and any precautions about its use. Know when you need to give your child oxygen.

When your child is in the hospital, bring some of their familiar things such as favorite toys or blankets. Talk with the nurses about any special habits or routines. This may include any special words that your child may use to describe their wants and needs.

It's also important to take care of yourself both physically and emotionally. Staying healthy will help you take care of your child. Joining a support group might be helpful. It's a good way to meet other parents who have a child with congenital heart disease. They can offer support and answer questions.

Support groups can be a source of emotional support. But you may also find counseling useful. It can help you understand and deal with the wide range of emotions you may feel.

Caring for Your Child at Home

Taking care of your child

• Have your child take medicines exactly as prescribed. Call your doctor 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 counselor. 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.

Giving medicine

Be sure you know how to give your child's medicines safely. Heart medicines can be very strong, so they can be dangerous if they aren't given correctly.

• Be sure you understand how much medicine to give and how to give it.
• If your child takes a blood thinner, be sure to get instructions.

  It's important to know how to give these medicines safely. Blood thinners can cause serious bleeding problems.

• Ask for help if you need it.
  • If you aren't comfortable giving medicine to your child, ask a health professional to help you.
  • Talk to your doctor about having a home health nurse visit you. The nurse can set up a schedule for the medicines, show you how to store them, and help you become more comfortable giving them.
• Think about questions to ask.

  Here are some common questions to ask your doctor or pharmacist.

  • If the baby spits out or throws up the medicine, do I give another dose?
  • If a dose of medicine is missed, should I give an extra or a double dose?
  • How soon after starting the medicine should I expect my child to start getting better?
  • If the medicine is to be given 3 or 4 times a day, do I need to wake my child at night for a dose of the medicine?
  • Should I give the medicine with food? If my child refuses to take the medicine, is it okay to add the medicine to food or drink to get the child to take it?
  • Can other medicines be given at the same time?
  • What are the most common side effects of the medicine?

Preventing infections

Congenital heart disease can raise the risk of an infection in the heart (endocarditis). To help prevent this infection, your child needs to take excellent care of their teeth throughout life. Good oral care can limit the growth of mouth bacteria that could get into the bloodstream and lead to infection.

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

Helping your child live well

As your child grows, you can help them lead an active, healthy, happy, and fulfilling life.

Most children and teens deal well with having congenital heart disease. But if you are worried about your child's emotional well-being, ask your child's care team for help.

As children get older, you can gradually teach them about their heart problem and how to care for their own health. You and your child's doctor can teach self-care skills to your child. These skills may include taking medicines and exercising safely. A heart-healthy lifestyle is also very important. It involves eating healthy foods, being active, staying at a healthy weight, and not smoking.

You can help your teen reach their educational and career goals. If your teen's heart problem might place restrictions on employment, then vocational counseling and employment advice may be helpful for planning a career. Talk with a health professional or the school counselor for information.

You can also teach your teen or young adult how to work with the healthcare system. For example, you can teach them how to make and prepare for doctor appointments. And you can help them get health insurance and know how to use it. If you need help with insurance, ask your doctor for a referral to a social worker or financial counselor.

When your child is an adult, they will need routine checkups. Be sure that your child has a primary care physician. Your child might also need to see a cardiologist regularly, such as once a year.

Caring for Your Child in the Hospital

Many parents are frightened and worried about their child being in the hospital. Ask questions about any procedures that you don't understand or any special care that is needed.

The following tips can help you and your child.

• Try to be with your child as much as you can.
  • If you can't stay with your child, visit often.
  • If your child is a newborn, hold and touch your baby often to promote bonding.
• Take some of your child's familiar things and family pictures to the hospital.
  • Favorite toys or blankets will help your child feel more at ease.
  • Take some pictures of the family. Place them where your child can easily see them.
  • Talk with your child about what's happening with other family members. Or sing some favorite songs together.
• Talk to the nurses about your child.
  • Tell them about your child's habits, typical routines, and general preferences.
  • Tell them about any special words that your child may use to tell others what they need.
• Help when you can.

  As much as you can, help the hospital staff with your child's care.

  • Find out if you'll be responsible for any treatments at home.
  • Take this time to learn how to do these treatments while the hospital staff is there to teach you.
• Ask if the hospital has child life specialists.

  A child life specialist can help you and your child in a variety of ways. This specialist can help your child feel more confident and comfortable, explain what to expect, and provide support for you and your child.

• Take care of yourself too.

  Do what you can to manage the stress of having a child in the hospital. For example, take short breaks from the hospital room. Try to find a place you can sleep. Try to eat healthy meals and snacks.

Caring for Yourself

Caring for a child with congenital heart disease can have a strong impact on your life as a parent. It's common to worry about the effect the condition will have on your child.

Try these tips to take good care of your own physical and emotional health. Doing so can help give you more energy to care for your child.

• Learn all you can about your child's heart disease.
• Don't blame yourself.

  You didn't cause the heart problem. Many things occurred for the problem to happen. No single factor causes congenital heart disease.

• Allow yourself to grieve about your child.

  It's okay to feel sad. You may grieve because your baby isn't 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 heart disease, talk with a doctor.

• Ask questions.

  Don't expect to remember everything that's 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 if there is a support group you might join. It's a good way to meet other parents who are dealing with similar issues.

• Talk to a counselor.

  A counselor can help you with your feelings. Get your entire family involved if you feel that you or your family needs help.

• Ask for help with health insurance, and get financial help if needed.

  Talk with your doctor about a referral to a social worker or financial counselor who can help you.