We understand that you may have a lot of questions when your child is diagnosed with congestive heart failure:
- What are the treatments?
- Will my child need to be hospitalized?
- How will it affect my child long term?
We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can explain your child’s condition and options fully.
To understand the problems that congestive heart failure may cause, it’s helpful to review how the circulatory and respiratory systems interact:
Note: Remember that the left and right sides of the heart pump blood to different parts of the body.
1. The right side of the heart pumps the blood to the lungs. When your child takes a breath (inhaling oxygen), the circulating blood cells pick up oxygen and enter the left side of the heart.
2. The left side of the heart pumps out the oxygenated blood (through the arteries) to supply the rest of the body with oxygen.
3. The blood – now with less oxygen – travels back (through the veins) to the right side of the heart.
4. The right side of the heart pumps the de-oxygenated blood back to the lungs.
If your child has congestive heart failure, it may affect either side of the heart and circulation-
Left sided heart failure
When the left side of the heart fails, it has a hard time pumping blood to the body.
- Blood begins to back up into the vessels in the lungs, and the lungs become congested.
- Breathing becomes faster and more difficult.
- When your child’s body does not receive enough blood to meet its needs, she may get easily tired with activities that require any effort and may also experience poor growth.
Right sided heart failure
When heart failure affects the right side of the heart, it has a hard time pumping blood to the lungs.
- Blood begins to back up in your child’s liver and veins.
- This may lead to fluid retention, and you may notice edema (swelling) in your child’s feet, ankles, eyelids and abdomen.
Can congestive heart failure be anticipated?
It can for some children. Children with congestive heart failure fall into two groups:
1. The first group includes children who have known heart problems and are already seeing a cardiologist. These problems include some of the more serious birth defects of the heart and children with cardiomyopathy (heart muscle disease).
2. The second group includes children who have previously been healthy. Among these children:
- Sometimes a heart problem had been going on for a while but has not been detected because the symptoms have not been strong enough and the physical exam may have remained normal in early stages of the problem
- Sometimes, the problem comes on suddenly (for example, an infection of the heart muscle, myocarditis).
What causes heart failure in children?
In children, the cause of heart failure is often a congenital (present at birth) heart defect. Children born with a normal heart may also develop heart muscle dysfunction (cardiomyopathy) due to infection (myocarditis), inherited or metabolic conditions, which can then progress to heart failure. Sometimes, the cause of heart muscle dysfunction is unclear; this is known as “idiopathic” cardiomyopathy.
Other conditions that may cause heart failure are:
What are the symptoms of congestive heart failure?
Your child’s symptoms likely depend on which side of the heart is having problems, and on how effectively the heart is able to pump blood. She may show signs related to:
- fast breathing during rest or exercise
- shortness of breath or heavy breathing
- feeling more tired than usual
- need to take frequent rest breaks while playing with friends
- falling asleep when feeding or becoming too tired to eat
growth and bodily changes
- lack of appetite; if your child is an infant, she may take longer to feed, or may not want to be fed
- your child seems to stop growing
- visible swelling of the legs, ankles, eyelids, face and sometimes abdomen
- abdominal pain
- cough and feeling of congestion in her lungs
Q: What caused my child to have heart failure?
A: Heart failure in children may be caused by a number of conditions, including congenital heart defects or cardiomyopathy (heart muscle disease). Your child’s doctor will fully explain her condition, including the cause, treatment options and prognosis.
Q: What are some of the most common signs of CHF?
A: Children with congestive 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
- congestion in her lungs
Q: What’s the long-term outlook for my child? Can heart failure be cured?
A: Long-term outlook depends on what caused the heart failure. Some children with heart failure due to myocarditis may have a complete recovery of heart function. More often, heart failure is a chronic condition. The good news is that we have several ways of treating and controlling CHF, 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 to make the heart pump in a more coordinated fashion
- mechanical support to unload the heart muscle and let the heart rest
- heart transplantation.
Q: How does this condition affect other aspects of my child’s health?
A: It’s important to remember that your child’s CHF 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 congestive 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.
Q: Will my child need a heart transplant? When?
A: 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 assistive 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. Read more about heart transplants.
Questions to ask your doctor
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.
Lots of 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?
- How much experience does this institution have in treating children with congestive heart failure?
- If any symptoms seem to get worse or change suddenly, what's the best way for us to contact you?
Keep family and friends up to date during your child’s treatment by creating a free Boston Children’s Care Page.
Back to School program
At age 11, Ronald (R.J.) Agostinelli was diagnosed with acute lymphoblastic leukemia, a cancer of the white blood cells. He missed seven months of elementary school while having chemotherapy. Here, R.J. talks about what it was like returning to his class after a long absence.