Heart Failure in Children

The heart is a muscle that pumps oxygen-rich blood to all parts of the body. When you have heart failure, the heart is not able to pump as well as it should. Blood and fluid may back up into the lungs (congestive heart failure). Some parts of the body don’t get enough oxygen-rich blood to work normally. These problems lead to the symptoms of heart failure.

The most common cause of heart failure in children is a heart defect that is present at birth (congenital). Other causes include:

• Heart muscle disease or enlargement of the heart muscle (cardiomyopathy). This is often an inherited cause.

• Decrease in the blood supply to the heart (ischemia). This is rare in children.

• Heart valve disease.

• Irregular heartbeats (cardiac arrhythmias).

• Heart block.

• Drugs and toxins.

• Low red blood cell count (anemia).

• Infections.

• Medicine side effects, especially from medicines used to treat cancer.

• Chronic kidney disease.

• High blood pressure in the lungs (pulmonary hypertension).

Symptoms can occur a bit differently in each child. They can include:

• Swelling (edema) of the feet, ankles, lower legs, belly (abdomen), liver, and neck veins.

• Trouble breathing, especially with activity including rapid breathing, wheezing, or excessive coughing.

• Poor feeding, vomiting after feeding, and poor weight gain (in infants).

• Feeling tired.

• Excessive sweating while feeding, playing, or exercising.

• Irritability.

Older children may also have:

• Weight loss.

• Passing out.

• Chest pain.

How severe the symptoms are depends on how much of the heart's pumping ability is affected.

The symptoms of heart failure can be like other health conditions. Have your child see their health care provider for a diagnosis.

The provider will ask about your child’s symptoms and health history. They will do a physical exam on your child. The provider will look for symptoms that may be related to heart failure. If the provider thinks your child has heart failure, your child may need to see a pediatric cardiologist. This is a doctor with special training to diagnose and treat heart problems in children. Tests for heart failure may include:

• Blood and urine tests. Abnormal results may help find heart failure.

• Chest X-ray. The X-ray may show heart and lung changes.

• Electrocardiography (ECG). The ECG may show changes in the heart's rhythm.

• Echocardiography (echo). Ultrasound waves are used to study the motion of the heart's chambers and valves. The echo may show changes caused by heart failure, such as enlarged chambers.

• Cardiac catheterization. The provider puts a small, flexible tube (catheter) into a blood vessel and moves it to the heart. This measures pressure and oxygen levels inside the heart.

Treatment will depend on your child’s symptoms, age, and general health. It will also depend on how severe the condition is.

If heart failure is caused by a congenital heart defect, correcting the defect may cure the heart failure. Medicines are often used to treat heart failure in children. They may include:

• Digoxin. This is a medicine that can help the heart beat stronger with a more regular rhythm.

• Water pills (diuretics). These help the kidneys get rid of extra fluid that may build up in the body.

• ACE (angiotensin-converting enzyme) inhibitors. These medicines help open the blood vessels and lower blood pressure. This makes it easier for your child's heart to pump blood to the body.

• Beta-blockers. These help lower the heart rate and blood pressure. This also makes it easier for the heart to pump blood to the body.

• Mineralocorticoid receptor antagonists. These medicines help get rid of extra fluid in the lungs and may help in preventing fibrosis of the heart muscle.

• Angiotensin II receptor blockers (ARBs). ARBs lower blood pressure by dilating arteries and decreasing blood volume by loss of salt. They treat heart failure by making it easier for the heart to pump and improving blood flow.

Other treatments include:

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

• Cardiac resynchronization therapy. This uses a special type of pacemaker. This treatment may be used in some children with long-term heart failure.

• Mechanical support devices. Children with severe heart failure may be helped with special devices and tools. Your child may use these while waiting for a heart transplant.

• Heart transplant. A healthy donor heart replaces your child's diseased heart.

Children may also need the help of a nutritionist who can help with feeding and managing fluids. Older children may benefit from an exercise rehab program.

Heart failure can cause many complications. These include:

• Poor growth and development.

• High blood pressure in the blood vessels between the heart and lungs (pulmonary hypertension).

• Irregular heartbeats (arrhythmias).

• Blood clots. If a clot blocks the blood supply to the brain, a stroke may occur.

• Organ damage in the kidney or liver.

• Low red blood cell count or low hemoglobin level (anemia).

How well your child lives with heart failure depends on many things, including their age. It also depends on how severe the symptoms are and what the treatment is. Your child’s provider will check them often. Some pediatric heart centers have special programs for heart failure. Your child may need:

• Daily medicines.

• Nutritional supplements.

• A plan for activity and exercise. The cardiologist will help set this up.

When to contact your child's doctor

Contact your child's health care provider if your child's symptoms get worse. These may include:

• Swelling (edema).

• Feeling tired.

• Not eating well.

• Sudden weight gain.

• Pallor (pale color to skin).

• Palpitations.

Call 911

Call 911 if:

• Your child has chest pain.

• Your child has trouble breathing.

• Your child faints or is unresponsive.

• Heart failure means your child's heart isn't able to pump as well as it should.

• The most common cause of heart failure in children is a congenital heart defect.

• Common symptoms in children include trouble breathing, tiredness, and poor growth.

• Treatment may include fixing a defect, taking medicines, or using a device.

Tips to help you get the most from a visit to your child’s provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are and when they should be reported.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.