Congenital Heart Defects - Living With - Living With

Ongoing medical care includes:

• Having check-ups with a pediatric cardiologist or an adult congenital heart specialist as directed
• Seeing your or your child’s primary care doctor for routine exams
• Taking medicines as prescribed to prevent complications
• Going to the dentist for routine cleanings and brushing your teeth regularly

Adults should go to medical centers that have specialized programs for adults with congenital heart disease.

Return to Treatment to review possible treatment options for congenital heart defects.

Your doctor will recommend that you adopt lifelong heart-healthy lifestyle changes.

• Heart-healthy eating. Following a heart-healthy eating pattern, which includes consuming plenty of vegetables, fruits, and whole grains, reduces the risk of high blood pressure and obesity.
• Being physically active. 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. Some people with congenital heart defects may need to avoid competitive sports. Most people with congenital can participate in recreational sports, physical education classes, or general physical activity. Ask your doctor how much and what kinds of physical activity are safe for you or your child. Remember to ask the doctor for a note that describes any limits on your child's physical activities. Schools and other groups may need this information.
• Aiming for a healthy weight. After treatments and surgery, growth and development may improve. Children and adults with congenital heart defects are at risk for obesity, which can lead to high blood pressure and other conditions that can increase the risk for heart problems.

Some babies and children who have congenital heart defects do not grow as fast as other children. They may not eat as much as they should and, as a result, may be smaller and thinner than other children.

Children with congenital heart defects may also start certain activities—such as rolling over, sitting, and walking—later than other children.

Children who have developmental problems as a result of their heart defects may need tutoring, special education, physical therapy, occupational therapy, or speech therapy.

Congenital heart defects can lead to emotional health issues for the person with the health problem and his or her close family.

• Adults may experience depression or anxiety because of their heart health. They may feel lonely or self-conscious about surgical scars. Psychotherapy 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.

Adult women with congenital heart defects are at increased risk of pregnancy complications and have special health considerations for birth control and pregnancy. Talk to your doctor about the following:

• Birth control. Some women with congenital heart defects should avoid some methods of birth control. Talk to your doctor about the best method for you.
• Medicines. Some medicines prescribed to adults with congenital heart defects are not safe to take during pregnancy, as they may harm your baby.
• Tests to evaluate your heart. During pregnancy, a woman’s organ systems, including the heart and blood vessels, go through major changes to support the growing baby. Your doctor may order extra tests before pregnancy to determine whether your heart can tolerate pregnancy. Most women with congenital heart defects can have normal pregnancies.
• Genetic testing.  People who have congenital heart defects are at increased risk for miscarriage and of having babies with congenital heart defects. Your doctor may suggest that you speak with a genetic counselor or have genetic tests done. Your doctor may have you undergo fetal echocardiography, a test to look for congenital heart defects in your unborn baby.

The move from pediatric care to adult care is an important step in treatment.

Talk with your teen’s healthcare team about creating a plan to help your teen transition to adult care. Start planning as soon as your teen is able and willing to fully take part in this process.

Following a transition plan has many benefits. It will help your teen with the following:

• Getting used to talking with healthcare providers.
• Learning about the adult healthcare system.
• Taking responsibility for his or her medical care.
• Understanding the importance of having health insurance and learn what his or her insurance covers.

A transition plan also can help your teen think about other important issues, such as future education and employment, birth control and pregnancy planning, and making healthy choices about heart-healthy eating, physical activity, and other heart-healthy lifestyle changes. Emotional health should also be part of the transition plan.

Older teens should start practicing going to the doctor without a parent.

For the transition plan, work with healthcare providers to compile a packet of medical records and information that covers all aspects of the heart defect, including:

• Diagnosis
• Health insurance
• Prescribed medicines
• Procedures or surgeries
• Recommendations about medical follow-up and how to prevent complications

Several laws protect the employment rights of people who have health conditions, such as congenital heart defects. The Americans with Disabilities Act and the Work Incentives Improvement Act try to ensure fairness in hiring for all people, including those who have health conditions.

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 by ultrasound, magnetic resonance imaging (MRI), or computed tomography (CT) to look for liver disease.

People with congenital heart defects, and their caregivers or family members, can take steps to help prevent complications of their condition or from surgical treatments of their congenital heart defect.

• Anti-arrhythmics. These drugs control arrhythmia and may be used for patients whose congenital heart defect causes arrhythmia.
• Antibiotics. People with certain types of congenital heart defects may have an increased risk of infective endocarditis. Your doctor may recommend antibiotics to reduce the risk of infective endocarditis before dental procedures or other procedures that run the risk of introducing bacteria to the bloodstream. Good oral health also decreases the risk of infective endocarditis. Learn more in our Heart Inflammation Health Topic.
• Anticlotting medicines. You may need to take anticoagulant, antiplatelet, and fibrinolytic medicines to treat blood clots or prevent blood clots from forming. These medicines are often prescribed long-term to people with artificial shunts and mechanical heart valves. Long-term use of warfarin, a common anticoagulant, may increase the risk of osteoporosis.
• Blood pressure medicines. These drugs help control blood pressure. Common types of blood pressure medicines include diuretics, beta blockers, and angiotensin-converting enzyme (ACE) inhibitors.
• Pacemaker. Pacemakers can be given to both children and adults with congenital heart defects to help control abnormal heart rhythms, also known as arrhythmias.
• Routine vaccinations are especially important for 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.
• Special care during surgery. 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.
• Training for sudden cardiac arrest. Caregivers and family members can train in cardiopulmonary resuscitation (CPR) and using a type of defibrillator called an automated external defibrillator (AED).