Congenital Heart Defects
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Congenital Heart Defects

Congenital Heart Defects Living With

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The outlook for children who have congenital heart defects is much better today than it was in the past. Advances in diagnosis and treatment allow most of these children to survive to adulthood, which means that more and more adults are living with congenital heart disease.

What are ways to manage a congenital heart defect?

Receive routine follow-up care

  • Schedule regular check-ups with a primary care doctor as well as a pediatric cardiologist or an adult congenital heart specialist, if needed
  • Take medicines as prescribed to prevent complications
  • Go to the dentist for routine cleanings and brush your teeth regularly

Make healthy lifestyle changes

  • Choose heart-healthy foods. Following a heart-healthy eating pattern, which includes consuming plenty of vegetables, fruits, and whole grains, reduces heart disease risk factors like high blood pressure and obesity.
  • Get regular physical activity. Most people with congenital heart defects can be physically active. Physical activity can improve physical fitness and lower many heart disease risk factors, including high blood pressure. The amount or type of physical activity you or your child can do depends on the type of congenital heart defect, the medicines you may be taking, and the devices that may be implanted, Ask your doctor how much and what kinds of physical activity are safe for you or your child.
  • Quit smoking. Visit Smoking and Your Heart and our Your Guide to a Healthy Heart. Although these resources focus on heart health, they include basic information about how to quit smoking. For free help and support to quit smoking, you can call the National Cancer Institute’s Smoking Quitline at 1-877-44U-QUIT (1-877-448-7848).
  • Aim for a healthy weight. If you are overweight or have obesity, you can improve your health by aiming for a healthy weight.
  • Manage stress. Learning how to manage stress and cope with problems can improve your mental and physical health. Learning relaxation techniques, talking to a counselor, and finding a support group can help.

Take care of your mental health

  • Adults may experience depression or anxiety because of their heart health. Seeing a counselor or participating in a support group may help.
  • Children and teens who have serious conditions or illnesses may feel isolated if they need to be in the hospital a lot. Some may feel sad or frustrated if they have growth, development, or learning delays compared to other children their age. If you have concerns about your child's emotional health, talk with your child and your child’s doctor.
  • Parents or caregivers may find it stressful caring for a child with a congenital heart defect. Your child’s doctor may be able to help you find support.

Prevent or manage complications

Complications depend on the type of congenital heart defect you have. Some possible complications include:

  • Arrhythmia, which is a problem with the rate or rhythm of the heartbeat
  • blood clot
  • Developmental disorders and delays. Children with congenital heart defects are more likely to have problems with behavior. They are also more likely to have speech and attention-deficit/hyperactivity disorders.
  • Infections that can cause pneumonia or endocarditis (Inflammation of the inner lining of the heart chambers and valves)
  • Endocrine disorders, including thyroid problems, bone health issues, and diabetes.
  • Heart failure. Heart failure is the leading cause of death in adults with congenital heart defects. Some children with congenital heart defects can also develop heart failure.
  • Pregnancy complications. Women with congenital heart defects have a higher risk of complications during pregnancy and childbirth.
  • Kidney or liver disease
  • Pulmonary hypertension
  • Stroke

Though some complications cannot be prevented, many can. Some ways to prevent or manage complications are:

  • Take medicine as prescribed. Depending on the type of congenital heart defect, medicines may be needed to treat medical conditions related to your congenital heart defect. For example, anti-arrhythmic medicine may be needed to treat arrhythmia, anticlotting medicine may be needed to prevent blood clot from forming, and blood pressure medicine, such as diuretics and beta blockers, may be needed to control high blood pressure.
  • Use a pacemaker, if necessary, to help control abnormal heart rhythms (arrhythmias)
  • Receive routine vaccinations, which are especially important in children with congenital heart defects. Adults with ongoing heart or immune problems should have a pneumococcal vaccination to prevent pneumonia and complications such as meningitis.
  • Be sure your doctor is aware of your congenital heart defect before any surgery, not just heart surgery. People with congenital heart defects are at higher risk of problems during surgery.
  • Have a plan for possible emergencies. In case of cardiac arrest, caregivers and family members can train in cardiopulmonary resuscitation (CPR) and using an automated external defibrillator (AED).

Monitor your condition

To monitor your or your child’s condition, your doctor may recommend the following tests, depending on the type of congenital heart defect:

  • Blood or urine tests to monitor the function of organs affected by a congenital heart defect.
  • Spirometry to measure how well the lungs are working.
  • Abdominal imaging using ultrasound, magnetic resonance imaging (MRI), or computed tomography (CT) to look for liver disease.
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