Congenital Heart Defects: Caring for Your Child
Caring for a child who has a congenital heart defect 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 well.
- Giving medicines.
- Preventing infections.
- Watching your child's level of activity.
- Giving your child oxygen, if needed.
It may be hard to get your child to eat enough. That's because children who have a heart defect may get tired while eating, so they may eat less. It may take them longer than you expect to eat a healthy meal.
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. And your child may need antibiotics before dental procedures to protect against infection.
Most children can exercise. But check with your doctor about how much activity they can do. Find out what types of activities they might need to avoid.
Your child may need 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 a heart defect. 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 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.
- 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.
- 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.
- 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 or American Heart Association.
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?
A congenital heart defect can raise the risk of an infection in the heart (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 the doctor if your child has signs of a skin infection or an infected wound.
Some children take antibiotics before they have any 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
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."
As children get older, you can gradually teach them about their heart defect and how to care for their own health. Your child's doctor can help you teach self-care skills to your child. These skills include taking medicines or limiting exercise, if needed. A heart-healthy lifestyle is also very important. It involves eating healthy foods, being active, staying at a healthy weight, and not smoking.
If your teen's heart defect places 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.
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.
Caring for 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 common to worry about the effect the condition will have on your child's future.
Try these tips to take good care of your own physical and emotional health. Doing so will help give you more energy to care for your child with special needs.
- Learn all you can about your child's heart defect.
- Don't blame 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 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 illness, 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 local 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 dealing with the situation. Coping with a child who has a lifelong illness impacts the entire family.
- 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.
- Know your health insurance options.
In the United States, children with congenital heart defects may qualify for public health insurance programs. These programs vary depending on the state where you live, but they may include Medicaid, Title V, or the Children with Special Health Care Needs (CSHCN) program.