KidsMD Health Topics

Congestive Heart Failure

  • We make a commitment to our patients that we will leave no stone unturned to take care of a child with a heart condition. We will think outside the box, and we will look into any possible option that may exist.

    --Francis Fynn-Thompson, MD, surgical director, Heart and Lung Transplant Programs

    Many people think that heart failure affects only adults, but it can affect anyone, including infants, children and teenagers. When adults have heart failure, meaning that the amount of blood pumped by the heart is not enough to meet the body’s needs, it’s often related to risk factors of coronary artery disease such as smoking, high blood pressure and  diabetes.

    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. There are other causes as well, and sometimes, the cause of heart muscle dysfunction is unclear; this is known as “idiopathic” cardiomyopathy.

    • Congestive heart failure means that the blood gets backed up (congested) in child’s blood vessels.      
    • Symptoms may differ depending on which side of the heart is affected.
    • It’s a serious condition, but at the Cardiovascular Program at Children’s Hospital Boston, we have several different ways of treating it.

    The Boston Children's Hospital approach

    The Cardiovascular Program at Boston Children's is the largest pediatric heart program in the United States. We provide a full range of care from diagnostic assessment to interventional therapy using cardiac catheterization and cardiac surgery.

    Coming to Children’s means that your child will benefit from some of the newest and most advanced tools, techniques and treatments – that’s one of the reasons why we were ranked #1 in the United States by the U.S. News & World Report for Pediatric Cardiology and Cardiac Surgery in 2010.

    Our staff includes more than 80 pediatric heart specialists who provide care for thousands of children and adults with congenital heart defects and acquired heart conditions each year that range from simple to complex cases.

    You can have peace of mind knowing that Boston Children’s surgeons treat a large number of some of the most complex pediatric heart conditions in the world, with excellent success rates. And we provide families with a wealth of information, resources, coordination and support—before, during and after your child’s treatment.

    Boston Children’s is also home to one of the largest pediatric heart transplant programs in the country. If your child needs a heart transplant, our team will provide pre- and post-operative care for your child and your family. Read more about the Heart Transplant Program.

    With our compassionate, family-centered team of caregivers providing expert treatment, follow-up and aftercare, you and your child are in the best possible hands.

    History of innovation

    In 1938, Boston Children’s cardiac surgeon Robert Gross, MD, performed the world’s first successful surgery to correct a child’s heart defect. Since that time, we have gained recognition around the globe for our leadership in pediatric cardiology and continue to make critical advances in the field. 

    Congestive heart failure: Reviewed by Tajinder (TP) Singh, MD
    © Boston Children's Hospital; posted in 2011

  • 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:

    breathing

    • fast breathing during rest or exercise
    • shortness of breath or heavy breathing

    fatigue

    • 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

    feeling sick

    • nausea
    • abdominal pain
    • vomiting
    • cough and feeling of congestion in her lungs
    • sweating

    FAQ

    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
    • cough
    • 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?

    CarePages

    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.

  • The first step in treating your child is forming an accurate and complete diagnosis. If your child’s doctor suspects that your child has heart failure, we will ask you questions about your child's appetite, breathing patterns and energy level, obtain a complete medical history and examine your child. Your doctor may order a chest x-ray to see how large the heart appears.

    Some tests your child’s cardiologist may request include:

    • Echocardiogram (echo), which uses sound waves to produce a video of the heart's chambers and valves in motion. The echo sound waves create an image on the monitor as an ultrasound transducer is directed at your child’s heart. 
    • Electrocardiogram (ECG or EKG), which records the electrical activity of your child’s heart, shows abnormal rhythms (arrhythmias or dysrhythmias) and may suggest problems with the heart muscle. 
    • blood tests to check for viruses, metabolic and genetic tests, if indicated, to help determine what caused the heart failure. We also often conduct liver and kidney function tests to see if those organs are affected by heart failure.
    • treadmill or bicycle exercise tests can test heart function during exercise stress, if your child is old enough for the test (6 years or older)
    • biopsies– to check for disease or infection

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best treatment options.

  • It's entirely natural that you might be concerned right now about your child's health; a diagnosis of congestive heart failure can be frightening. But you can rest assured that at Boston Children's Hospital, our compassionate caregivers will do everything they can to secure the best possible outcome for your child, and we will keep you involved and updated every step of the way.

    Treatment for congestive heart failure will depend your child's age and the cause and severity of the CHF. Common components of treatment include medication, surgery, device therapy and sometimes heart transplantation.

    Medication

    Medications are often helpful in treating CHF initially, though eventually they may lose their effectiveness. They may also be used after surgery to help your child's heart function as it heals.

    While your child's doctor will determine the medications that are most appropriate for her, some of the most commonly prescribed include:

    • digoxin to help strengthen her heart muscle and help it pump more effectively
       
    • diuretics, such as lasix and aladactone, to relieve congestion and edema
       
    • vasodilators, such as captopril, enalapril or lisinopril, to relax the muscle of the blood vessels, making it easier for the heart to pump
       
    • beta blockers to slow down the heart rate and reduce the size of your child's heart (many times, heart organs with CHF are enlarged, which makes them less efficient at pumping blood)

    Surgery

    Depending on the cause of your child's congestive heart failure, surgery may help. 

    Our pediatric cardiac surgeons have access to robotic surgery, video-assisted thoracoscopic surgery and other types of minimally invasive cardiac surgery. And through techniques we practice in our Interventional Cardiac Catheterization Program some children are able to bypass an operation altogether.  

    Device therapy

    A ventricular assist device (VAD) is a battery-operated pump connected to the heart. It collects blood from the failing heart through a tube and pumps it back to the main blood vessel coming out of the heart. The device can be used to supplement your child's heart function while he waits for a heart transplant. At Boston Children's, we also offer cardiac resynchronization therapy, a specialized pacemaker that helps some children with heart failure by making the heart walls pump blood in a more coordinated fashion.

    Heart transplant

    A heart transplant is an operation in which the transplant surgeon removes your child's poorly functioning heart and replaces it with a new one.

    After surgery, the new heart begins functioning and a child's health often improves quickly, although transplants carry complications of their own. Read more about heart transplants.

     

    Coping and support

    It's important to remember that you're not alone as you deal with the many emotional and psychological issues that affect your family as you deal with your child's heart condition. There are many resources available to help you and your family – within Boston Children's, in the outside community and online. Some of these resources are:

    Patient education: From your first visit our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. They will also reach out to you by phone, continuing the care and support you received while at Boston Children's.

    Parent to parent: Want to talk with someone whose child has been treated for congestive heart failure? We can often put you in touch with other families who have been through similar experiences and can share their experience .

    Faith-based support: If you are in need of spiritual support, we will help connect you with the Boston Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.

    Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.

    On our For Patients and Families site, you can read all you need to know about:

    • getting to Boston Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family

    The experience journal

    The Experience Journal is an online tool developed here at Boston Children's that provides a place for you and your child to read stories and advice from other kids and families affected by pediatric heart disease, and share some of your own.

    Integrative therapies

    Our patient-centered approach means that we want your child to not only get better, but also feel good along the way. Throughout the hospital, you'll find clinicians trained in therapies that can make your child feel more comfortable, learn to shift focus away from pain and enjoy some peaceful moments during what may be an anxious time. Read more about how acupuncture, guided meditation, guided imagery, massage, Reiki and therapeutic touch could help your child.

  • Boston Children’s Hospital is a world leader in opening new avenues of “translational research,” bringing laboratory advances to the bedside and doctor’s office as soon as possible. Senior medical staff members of the Department of Cardiology participate in clinical research activities, and many conduct laboratory research, as well.

    Members of the Boston Children’s Cardiac Surgery Research Laboratory—a multidisciplinary team of basic and applied research investigators who hold faculty appointments at Harvard Medical School—are studying the mechanisms of heart disease and new treatments for children with congenital heart defects and congestive heart failure.

    Cardiac innovations

    Reawakening the heart’s regenerative capacities

    The problem: Kids with congenital heart defects often suffer from heart failure. And since heart muscle has little growth capacity after birth—nowhere near enough to fix a severe cardiac injury—a heart transplant is often the only treatment option.

    Innovative solution: Researchers in Boston Children’s Cardiovascular Program discovered a growth factor, called neuregulin1 (NRG1), that can reawaken the heart’s regenerative capacities, and may be able to strengthen the heart after a heart attack and in children and adults with heart failure.

    NRG1, which is involved in the initial development of the heart and nervous system, spurred heart-muscle growth and recovery of cardiac function when injected systemically in rats. Preparations are underway to test the growth factor in humans. Doctors now envision a time when patients will receive monthly infusions to build up their hearts.

    Creating new ways to perform surgery

    Problem: When surgeons perform heart surgery on a baby, they need to open the infant’s chest and stop her heart—an inva­sive, lengthy procedure that can cause life-threatening complications. Pedro del Nido, MD, chief of Cardiac Surgery at Boston Children’s, had to perform surgery on his tiny patients using this method, or come up with a way to improve it.

    Innovative solution: Del Nido decided to develop a way to perform surgery on a still-beating heart. But he needed two things that didn’t exist: superior imaging tools that could show the structures inside the heart while it’s beating, and tiny instruments to perform the intricate surgery.

    So he bor­rowed technology from the videogame industry and developed stereo-rendered 3-D ultrasound imaging that allows surgeons to see inside the beating heart as a hologram.

    Del Nido also designed new instruments. One is a millimeter-sized tool that extends into the heart through needle-sized incisions. Using a joystick controller and real-time imaging, a surgeon can now navigate through the beating heart’s chambers to remove blockages, repair faulty valves and close leaks.

    Results: Del Nido’s 3-D tool appears not only to provide superior imaging, but also to yield faster surgery times. Researchers using it to operate on pigs with congenital heart disease performed the procedure 44 per­cent faster than before. Learn more.

    A life-saving bridge to transplant

    Problem: Sometimes, children waiting for donor hearts are so sick that they must be placed on life support mechanisms that keep them immobilized and unresponsive.

    Innovative solution: Boston Children’s cardiologists and cardiovascular surgeons have researched, written about and implanted the Berlin Heart. This is a device that pumps blood from the heart to the body and/or to the lungs. Only the “delivery tubes” are implanted, and the rest of the device operates on a rolling cart outside of the body, so your child can move around.

    Results: In 2008, we became one of only 10 pediatric institutions in the United States to receive unconditional approval from the FDA for ongoing Investigational Device Exemption (IDE). That means that even though the device has not yet secured full FDA approval, if your child needs a Berlin Heart, our experts are trusted to implant and maintain it.

    Children’s scientific research program is one of the largest and most active of any pediatric hospital in the world. In particular, our cardiovascular and cardiac surgery researchers are yielding crucial insights into the causes and development of heart disease and disorders; paving ground for the most promising new treatments and interventions; and offering ideas and discoveries that could one day lead to cures. 

    Learn more about the Cardiovascular Program at Children’s Hospital Boston.

    Stem cells
    How Boston Children’s is using stem cells in the fight against heart disease

    © Boston Children's Hospital, 2010

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The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
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