When Your Child Has Heart Failure

Heart failure (HF) is a condition in which the heart does not fill or pump as well as it should. When this happens, fluid can build up in the lungs or body tissues (congestion). HF can cause lung problems, organ failure, and other serious problems in the body. HF can usually be treated, but it's important to find out the underlying cause. Your child’s healthcare provider will assess your child’s heart and discuss treatment options with you.

Healthcare provider listening to girl's chest with stethoscope.

What causes heart failure?

HF often develops in children with certain heart defects present at birth (congenital heart defects). These include defects such as holes in the heart, which cause an increased amount of blood flow from one side of the heart to the other. This changes the dynamics of blood flow. One side of the heart can become weaker. The heart then can't support the blood flow. That makes the heart function worse. HF can also be caused by other types of heart problems such as cardiomyopathy. This condition affects how well the heart pumps.

Some non-heart problems can also lead to HF, such as:

  • Kidney failure

  • Some cancer treatments

  • Diseases that affect the body's muscles, like muscular dystrophy

What are the symptoms of HF?

Symptoms vary but may include:

  • Swelling (edema) in the face, abdomen, ankles, or feet

  • Shortness of breath, rapid breathing, wheezing, or lots of coughing

  • Sweating

  • Weakness or tiredness

  • Poor feeding and weight gain (often in babies)

  • Racing heartbeat

  • Wheezing

  • Belly (abdominal) pain and nausea

In older children, symptoms may also include:

  • Weight loss

  • Passing out

  • Chest pain

  • Tiring easily during exercise

How is the cause of heart failure diagnosed?

Heart problems in children are usually diagnosed and treated by a pediatric cardiologist. This healthcare provider specializes in diagnosing and treating children's heart disease. The cardiologist will do a physical exam and ask about your child’s health history. The following tests may be done to find the underlying cause of HF:

  • Chest X-ray. This test takes a picture of the heart and lungs. The picture can show your child’s heart size and shape. This picture also shows how much fluid is in your child's lungs. This can be a clue to how well the heart is working.

  • Electrocardiogram (ECG). During this test, the electrical activity of the heart is recorded to check for heart rhythm problems (arrhythmias) or problems with heart structure.

  • Echocardiogram (echo). During this test, sound waves (ultrasound) are used to create a picture of the heart. This test can show problems with heart structure or function. This includes showing how well the heart pumps, if the heart is enlarged, the direction and strength of blood flow, or if there are any valve problems.

  • Lab tests. For these tests, blood and urine samples are taken to check for problems in the kidneys or other organs.

How is heart failure treated?

Specific treatment for your child depends on the cause of HF. If the cause of HF in your child is a congenital heart defect, a catheter or surgical procedure may be done to repair the defect.

  • Medicines are often prescribed to help manage your child’s symptoms. These can include:

    • Diuretics. These help rid the body of extra water. This reduces fluid in the lungs and may improve breathing. It can also treat edema. These are very important in helping manage fluid status in heart failure.

    • Angiotensin converting enzyme (ACE) inhibitors. These medicines make blood vessels relax and allow blood to flow more easily from the heart. 

    • Angiotensin receptor blockers (ARBs). These are very similar to ACE inhibitors. They may be used in a child who can't take an ACE inhibitor.

    • Angiotensin receptor blockers with neprylisin inhibition (ARNI). This medicine is a combination of an ARB and another medicine that helps blood vessels relax, reduce heart strain, and promote salt and water excretion.

    • Beta-blockers. These lower blood pressure and slow heart rate by altering hormones that can damage the heart. Slowing the heart also gives the heart more time to fill with blood. Beta-blockers can improve the heart’s pumping action over time.

    • Digoxin. This medicine helps the heart pump blood with more force. This can improve the heart’s ability to work better when children don't respond to other medicines.

  • Pacemaker. Some children with heart failure need an artificial pacemaker. Pacemakers help when the heart is not pumping well because of a slow heartbeat.

  • Cardiac resynchronization therapy. This treatment uses a special type of pacemaker that paces both bottom chambers of the heart at the same time. It makes sure they are in sync and that contractions are coordinated. This can improve the heart's function. This treatment may be used in some children with long-term heart failure.

  • Heart transplant. This treatment replaces a diseased heart with a healthy heart from a donor. It is only an option for very serious disease. And it often takes some time to find a suitable donor heart. In some cases, a child may be able to have a short-term device, such as a mechanical pump, that helps the heart work while they wait for a transplant.

Your child may be helped by seeing a nutritionist. This expert can advise on nutrition for growth problems and to help balance fluids. Your child may also take part in an exercise rehab program to help them be more active.

What are the long-term concerns?

The outcome for a child with HF depends on many factors, including the underlying heart problem. The cardiologist will talk with you about your child’s condition, treatment options, and potential outcomes.