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Congenital Heart Disease In Children


What is congenital heart disease (CHD)?

CHD is a term used to describe defects in the structure of the heart. It may also be called congenital heart defect. Congenital means your child was born with the heart defect. Your child's heart defect may affect his heart valves, the walls of his heart, or the blood vessels. He may have a hole in part of the heart or narrowing of arteries connected to the heart. Blood may not be able to flow to your child's heart correctly, or it may not flow through his heart correctly. The defect may be mild or severe.

What are the signs and symptoms of CHD?

Your child may have any of the following, depending on the type of heart defect. He may not have signs or symptoms for a few years. He may never have signs or symptoms. Your child may have blue skin or nails when he is born. This is called cyanosis. If he does not have cyanosis, he may have high blood pressure or other problems caused by the defect. He may also have any of the following:

  • Trouble breathing, hyperventilation (breathing too quickly)
  • Chest pain or sweating
  • Blue skin or nails that becomes worse when your child cries
  • Fussiness, trouble feeding, or a lack of appetite
  • Slower growth, or being small and underweight
  • Being out of breath, especially after he moves quickly
  • Fatigue or fainting

What increases my child's risk for CHD?

  • A condition such as Down syndrome
  • Rubella infection in his mother during pregnancy
  • A condition such as lupus or type 1 or type 2 diabetes in his mother
  • Certain medicines his mother took during pregnancy
  • Alcohol use by his mother during pregnancy

How is CHD diagnosed?

A congenital heart defect may be found before your baby is born. He may also have signs of a heart defect right after birth, such as blue skin. Your child's healthcare provider will examine your child and listen to his heartbeat and breathing. Tell him about your older child's signs or symptoms. Tell him if your child has had the signs or symptoms before, and how long they lasted. Your child may need any of the following:

  • Blood tests measure the amount of oxygen in your child's blood. A heart defect can lower your child's blood oxygen level.
  • X-ray, CT, or MRI pictures may show the size and shape of your child's heart. Your child may be given contrast liquid to help his heart show up better in the pictures. Tell the healthcare provider if your child has ever had an allergic reaction to contrast liquid. Do not let your child enter the MRI room with anything metal. Metal can cause serious damage. Tell the healthcare provider if your child has any metal in or on his body.
  • A Doppler test checks the blood flow in your child's heart. A small metal disc with gel is placed on your child's chest. The disc helps your child's healthcare provider hear the blood flow.
  • An EKG records your child's heart rhythm and how fast his heart beats. It is used to check for heart enlargement and other problems with blood flow.
  • An echocardiogram is a type of ultrasound. Sound waves are used to show the structure and function of your child's heart.
  • A Holter monitor is also called a portable electrocardiography (EKG) monitor. It shows your child's heart's electrical activity while he does his usual activities. The monitor is a small battery-operated device that your child wears. It will show how fast your child's heart beats and if it beats in a regular pattern.
    Holter Monitor
  • A stress test helps your healthcare provider see how well your child's heart works when it is under stress. His heart function may be tested while he walks on a treadmill or rides a stationary bicycle. Medicine may be used instead to put your child's heart under stress.
  • Cardiac catheterization is used to show the blood vessels in your child's heart. A catheter is threaded into your child's heart through a blood vessel in his arm, leg, or neck. Contrast liquid is injected into an artery. Then x-rays of your child's blood flow are taken. Tell the healthcare provider if your child has ever had an allergic reaction to contrast liquid.

How is CHD treated?

Your child's heart defect may not need to be treated. The defect may need to be treated if it is severe or is a type that will not go away without treatment. Your child's age and overall health will also help healthcare providers decide if the defect should be treated. It may go away without treatment, or not cause health problems as your child gets older.

  • Medicines may be used to help your child's heart beat more regularly. Your child may need to take heart medicines for several years. He may also need medicine to help flush extra fluid from his body. He may urinate more while he is taking this medicine.
  • A catheter procedure may be used to repair a defect. A catheter is a long, thin tube. Your child's healthcare provider will move the catheter through a vein or artery until it is near the defect. He may place a patch or plug on a hole in your child's heart. To widen a narrowed area, he may inflate a small balloon device attached to the catheter. This will widen a narrowed valve in the heart.
  • Surgery may be needed to repair the defect. Your child may need surgery to have a heart valve repaired or replaced. Surgery can also help repair problems from blood vessels that did not form correctly. A heart transplant may be used if the defect is severe and other treatments do not work. Your child may need more surgery over time.

What can I do to manage my child's CHD?

  • Do not smoke around your child. Nicotine and other chemicals in cigarettes and cigars can cause heart and lung damage. Your child's risk for health problems is increased if he breathes in secondhand smoke. Talk to your older child about not smoking. Ask your healthcare provider for information if you or your older child currently smoke and need help to quit. E-cigarettes or smokeless tobacco still contain nicotine. Talk to your healthcare provider before you use these products.
  • Ask about physical activity. Exercise is important for heart health. Your child's healthcare provider can tell you how much exercise your child needs each day and which exercises are best for him. Your child may not be able to do some physical activities or sports. The decision may depend on the type of defect your child has and if it was repaired. Your child's healthcare provider can give you written instructions for activities your child can do. You can give the instructions to your child's school officials.
  • Give your child a variety of healthy foods. Healthy foods include fruits, vegetables, whole-grain breads, low-fat dairy products, lean meats and fish, and beans. Your child's healthcare provider or a dietitian can help you plan healthy meals and snacks for your child.
  • Keep your child's teeth clean and healthy. Have your child get regular checkups at the dentist and brushes his teeth as directed. Cavities increase your child's risk for endocarditis (infection in the lining around his heart). He may need an antibiotic before he has dental procedures. The antibiotic can help prevent an infection caused by bacteria.
  • Ask about vaccines your child needs. Vaccines can help protect your child from infections that can be dangerous for a child with a heart defect. Ask which vaccines your child needs and when to get them.

Call 911 for any of the following:

  • Your child has any of the following signs of a stroke:
    • Numbness or drooping on one side of his face
    • Weakness in an arm or leg
    • Confusion or difficulty speaking
    • Dizziness, a severe headache, or vision loss
  • Your child has a seizure.
  • Your child faints or loses consciousness.

When should I seek immediate care?

  • Your child has sudden shortness of breath.
  • Your child's lips or nails turn blue.

When should I contact my child's healthcare provider?

  • Your child has a fever.
  • Your child has chills, a cough, or feels weak and achy.
  • Your child is not gaining weight as he should.
  • You have questions or concerns about your child's condition or care.

Care Agreement

You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's healthcare providers to decide what care you want for your child. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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Further information

Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.