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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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CHD Treatment: Medications - 01-02-2010, 07:57 AM

Medicines often are needed to treat congenital heart defects until the defect can be repaired or corrected. Some complex acyanotic heart defects and most cyanotic heart defects require ongoing treatment with medicines even after the defect is repaired. Children with certain defects that cannot be completely corrected may have to take medicines for a long time.



Medicines typically are used to:
  • Treat heart failure by reducing the amount of extra fluid in the body (with diuretics), by increasing the strength of the heartbeats (with cardiac glycosides), or by enlarging blood vessels (with vasodilators).
  • Control irregular heartbeats by using antiarrhythmics.
  • Prevent endocarditic with antibiotics.
  • Improve blood flow to the lungs or the body (with prostaglandins and prostaglandin inhibitors).

Treatment with medicines varies depending on the:
  • Type of defect: Complex cyanotic heart defects usually need treatment with medicines more often than acyanotic heart defects.
  • Size of the defect: Children with large defects are likely to have symptoms of heart failure and to require medicines for it.
Medicines used 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 medicine to your child safely. For example, you should be confident with knowing how much medicine your child needs and how and when to give it.

Last edited by NeedyHearts; 01-02-2010 at 08:02 AM.
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CHD Treatment: Giving Medicines for a Child with CHD - 01-02-2010, 08:01 AM

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 medicines safely.
  • Be sure you understand how much medicine to give and how to give it.
  • If you are not comfortable giving medicine to your child, ask a health professional to help you.
Giving a child medicine is not always easy. Some questions to ask a health professional about giving medicine to your child include:
  • 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 to 4 times a day, do I need to wake my child up 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?
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CHD Treatment: Surgery - 01-15-2010, 01:33 AM

If your child has a large or complex congenital heart defect, he or she may need open-heart surgery. The kind of surgery will depend on what defect the child has. In general the types of surgery are:
  • Closing holes that have either formed or not closed. Usually, a patch or stitches are used.
  • Widening arteries or heart valves.
  • Returning the aorta or pulmonary arteries to the right position.
  • Repairing narrowed valves.
  • In rare cases, a heart transplant may be needed.
Be prepared for what to expect in the hospital. It may be shocking to see your newborn or child hooked up to so many machines and tubes. For example, your child will likely get medicines and fluids through an intravenous (IV) catheter. He or she may be on oxygen or a ventilator. Your child may have drains in the chest to remove fluids after surgery.

If your child is older, you can help your child be more comfortable and secure by preparing him or her for what to expect, asking questions, and letting him or her talk to the doctor too.

Surgery Choices
The type of surgery is determined by the defect and the surgeon's preference. Surgery is done for more complex defects or when catheterization cannot correct the defect.

What To Think About
Some congenital heart defects can be completely repaired with one surgery. Some of the more complex heart defects require several surgeries over several years.

Even after surgery, your child may still have symptoms such as weakness and a bluish tint (cyanosis) to the skin, lips, and nail beds. Your doctor may recommend limiting exercise or sports as your child gets older.
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CHD Treatment: Other Treatments - 01-15-2010, 01:36 AM

Heart catheterization may be used to correct certain congenital heart defects. Children generally recover more quickly from a heart catheterization procedure than from a surgery.

Additional treatment for a child with a congenital heart defect may involve counseling in nutrition, employment, or family issues in addition to medicines and surgery.
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CHD Treatment: Additional Treatment - 01-15-2010, 01:37 AM

Caring for your child with a congenital heart defect may involve many different types of therapy in addition to medicines and surgery. Some of these may include:

Oxygen therapy: Your child may need extra oxygen at home. It is given through a small tube that rests at the entrance to your child's nose. Oxygen can cause a fire to burn very rapidly, so no smoking or open flames are allowed in the room where oxygen is being used. The amount of oxygen will be prescribed by your child's doctor. Do not change the amount of oxygen you give your child without the advice of your doctor.

Home health nursing: If your child is very ill and needs several treatments and medicines, talk to your doctor about having a home health nurse visit you. A home health nurse can help you understand the treatments your child needs and teach you how to give medicines to your child.

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.

Nutrition counseling: Getting a child with a congenital heart defect to eat can be difficult at times. Talk with your health professional about nutrition counseling.
Vocational counseling. If your teen with a congenital heart defect has restrictions or is on medicines because of this condition, vocational counseling may be helpful when planning a career. Talk with a health professional or the school counselor for information
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Others: Exercise and congenital heart defects - 01-15-2010, 01:38 AM

Children and adults with congenital heart defects can tolerate varying levels of exercise. Generally, exercise restrictions are based on the severity and type of heart defect.

People with mild heart defects usually can participate in any type of sport or exercise. Those who have moderate or severe defects or who have had surgery require careful evaluation by a health professional before starting an exercise or sports program. Often a stress test EKG (a type of electrocardiogram) is done to determine the effect of exercise on the heart. Many children have this test by the time they start school and become involved with physical education classes and other activities.

Most adults who have congenital heart defects are aware of their safe exercise levels and are regularly evaluated. In rare cases, however, some people are diagnosed with a defect in adolescence or early adulthood. For these people, careful monitoring, physical exams, and exercise testing may be needed to determine whether any activities should be restricted.

Children and adults who have cyanotic heart defects and aortic valve stenosis may have exercise restrictions throughout their lives.
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03-13-2010, 08:36 AM

Need any help on child heart problems please do write.
We reach professionals to seek and provide you help.
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Please Help Children born with Heart Defects - 03-14-2010, 03:00 AM

Looking for a copy as well and did not see the excel file referenced above there is an excel file, but it just has some appendices. Is there somewhere else I can get an electronic copy?Thanks
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06-04-2010, 10:09 PM

Quote:
Originally Posted by maximmax View Post
Looking for a copy as well and did not see the excel file referenced above there is an excel file, but it just has some appendices. Is there somewhere else I can get an electronic copy?Thanks
Not sure what is referred in your post.
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