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NeedyHearts NeedyHearts is offline
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Join Date: Nov 2009
CHD Treatment: Home Treatment/Care - 01-02-2010, 07:54 AM

Congenital heart defects often are repaired with surgery or heart catheterization, but home treatment also plays an important role.

Coping with oxygen problems
Home treatment may include caring for a child who has cyanosis, or problems getting enough oxygen. Children with cyanosis may develop a bluish tint to the skin.

If your child has "blue spells":
  • Attempt to calm him or her. This is the most important thing you can do.
  • Try placing the 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 severe and do not improve with a change in position. Oxygen is given through a small tube at the nose. Your doctor will determine the proper amount of oxygen needed.
  • Note when the blue spells occur and plan activities to try to decrease the spells.
  • Try to prevent cyanosis by keeping the child warm, decreasing activity, and feeding small, frequent meals.
  • Notify your child's doctor when a blue spell happens.
Getting your child to eat enough
Nutrition is very important for children who have congenital 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.

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 initiate 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. 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 formula or breast milk.
  • Give smaller, more frequent, meals. Smaller meals do not require as much energy to eat or digest.
Giving medicines
Medicines to treat congenital heart defects are very strong and can be dangerous if they are not given correctly. It is important to know how to give your child's medicine safely.

Family issues
Take care of yourself and your family as you learn to deal with a lifelong condition. You can:

  • Talk to a counselor: It is 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 health professional.
  • Join a support group: It is helpful to be in contact with organizations and people who can offer support and answer your questions as they arise.
Note: We know the pain, We know the difficulty – One main aim this thread is to help needy parents, family members or any others, feel free to contact us thru Private Message.
  • Allow yourself time to adjust: It can be difficult to accept that your child has a serious illness, and it is normal to worry about the effect the condition will have on your child's future.

Dealing with a lifelong and possibly life-threatening illness in your child can have a strong impact on your life as a parent. Allow yourself to grieve about having a child with a heart defect.
  • Learn all you can about your child's heart defect.
  • Don't blame yourself. You did not cause the heart defect. Many things occurred for the defect to happen. No single factor causes congenital heart defects.
  • 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.
  • 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.
Expenses can quickly multiply if your child's heart defect requires several hospital stays and tests. You may get assistance from volunteer organizations. Talk with your health professional about a referral who can help you.

Adults with congenital heart defects often have a variety of issues to consider, including:

Pregnancy: If I get pregnant, will my child have a congenital heart defect too?

Congenital heart defects generally cannot be prevented. But before and during pregnancy you can lower your risk of having a baby with heart defects.

Women who plan to become pregnant and women who are pregnant can lower their risk of having a baby with a congenital heart defect by taking steps to have a healthy pregnancy.

If you are thinking of becoming pregnant and you or your partner has a congenital heart defect, ask your doctor about genetic counseling. This may help you find out if you have an increased chance of having a child with a heart defect. A woman who has a congenital heart defect should try to find out if becoming pregnant will increase her risk of health problems.

If you are pregnant and someone else in your family has or had a congenital heart defect, talk with your doctor about tests that can tell whether your baby (fetus) has a heart defect. Some heart defects can be found before the baby is born, and treatment can begin early.

Employment: Most adults with congenital heart defects can maintain regular employment but should consider their physical limitations, if any, when making career choices. As you start career planning, it is important to get a realistic and expert opinion from a cardiologist about your physical capabilities. With this information, you can seek job or vocational counseling, training and, if needed, a physical rehabilitation program.

Adults with congenital heart defects may be restricted from certain types of jobs, such as flying an airplane or joining the armed services, because of the potential risks to others in the event that they are not able to carry out their duties because of physical problems. But this does not mean that you should be otherwise restricted in your employment options.

Heart infection (endocarditis). Most people with congenital heart defects have a lifelong increased risk for endocarditis. They need to take excellent care of their teeth and any types of infections. They may need to take antibiotics before having certain dental and surgical procedures.

Exercise restrictions: People who have cyanotic heart defects or aortic valve stenosis or even some repaired congenital heart defects may need to be careful about exercise. Some children who have a congenital heart defect will have an exercise stress test done by the time they are in school. Talk with a health professional before starting any exercise or sports program.

Adults and teens with congenital heart defects may have self-esteem issues because of how they look. They may have scars from repeated surgeries, 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. It is hard for children with serious heart defects to feel "normal."

Last edited by NeedyHearts; 01-02-2010 at 08:02 AM.
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