Heart Failure Program | Frequently Asked Questions

Heart failure in children may be caused by a number of conditions, including congenital heart defects (defects that are present at birth) and cardiomyopathy (heart muscle disease). Your child’s doctor will fully explain the specific condition your child has, including the cause, treatment options, and prognosis.

Children with heart failure often feel fatigued from everyday activities, such as climbing a flight of stairs, and short of breath. Other signs include:

• failing to gain weight
• visible swelling of her legs, ankles, eyelids, and face
• cough
• congestion in her lungs

Long-term outlook depends on what caused the heart failure. Some children with heart failure due to myocarditis (inflammation of the heart muscle) may have a complete recovery of heart function. More often, heart failure is a chronic condition. Fortunately, we have several ways, depending upon its cause, of treating and controlling heart failure, including:

• surgery to fix valve defects or other defects of the heart muscle
• medications to strengthen the heart muscle and make it pump more effectively
• cardiac resynchronization therapy (using a pacemaker) to make the heart pump in a more coordinated fashion
• mechanical support to help the heart function
• heart transplantation to replace a failing heart

It’s important to remember that your child’s heart failure is caused by an underlying condition. Your child’s doctor will explain to you how other aspects of her health may be affected depending on her specific situation, and discuss treatment options with you.

If your child’s heart failure is severe, other organs, such as the kidneys and liver, may be affected because of congestion or because the heart is not pumping enough blood to them.

This depends on your child’s individual case. Some children may do quite well for months or years with oral medications. Others may need brief treatment with IV medications before switching to oral medications. If a child’s heart failure cannot be controlled with oral medications, they are evaluated for heart transplant. Some children may need a ventricular assist device (VAD) to support their heart function before a transplant. If your child’s doctors think that she may be a candidate for a heart transplant, we will explain the process fully to you.

After your child is diagnosed with heart failure, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.

Many parents find it helpful to jot down questions as they arise — that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed. If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.

Here are some questions to get you started:

• What’s the best treatment for my child right now?
• What should we expect within the next few weeks, months, and years? How is the condition likely to progress?
• What are the most important things I can do to manage my child’s condition?
• What symptoms should I be concerned with/looking for?
• If any symptoms seem to get worse or change suddenly, what's the best way for us to contact you?
• How much experience does this institution have in treating children with congestive heart failure?