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Cardiomyopathy in Children

  • As adults, we tend to think of heart disease as something our parents and grandparents might face … not our children. Unfortunately, the reality is that heart conditions do affect babies, infants, children and adolescents, as well as adults and older people. 

    One of the most common forms of pediatric heart disease is cardiomyopathy, an umbrella term used to describe several different problems that affect the muscle of the heart. 

    • Cardiomyopathy can cause either dilation or “stretching” of the heart muscle, or a thickening of the muscle tissue.
    • Less often, cardiomyopathy can involve a buildup of scar tissue or fat within the heart muscle.
    • Rarely, the heart muscle loses the ability to relax and blood cannot fill the heart properly.
    • Some forms of cardiomyopathy run in families.
    • Other times, cardiomyopathy develops because of another medical condition (like undergoing chemotherapy for certain childhood cancers).
    • In many cases, however, there is no clear cause for a child’s cardiomyopathy.
    • Some children with cardiomyopathy display few to no signs of illness at first, while others may be seriously affected by shortness of breath, dizziness and other symptoms from the beginning.
    • Sometimes, children need a heart transplant to manage their cardiomyopathy. 

    The detailed information on the following pages will help you, your child and your family gain a better understanding of cardiomyopathy and a clearer picture of what to expect in the weeks and months ahead.

    Setting the standard for ventricular assist device use in children 

    In 2007, Boston Children’s Hospital cardiac surgeon Francis Fynn-Thompson, MD, received special permission from the United States Food and Drug Administration (FDA) to implant a Berlin Heart—a mechanical device that temporarily takes over the heart’s pumping functions— in a 9-year-old boy on the waiting list for a donor heart. This groundbreaking procedure saved the patient’s life, and made pediatric medical history. Learn more

    How Boston Children's Hospital approaches cardiomyopathy

    The cardiologists, cardiac surgeons and nurses, cardiovascular imaging professionals and other clinicians in the Boston Children's Hospital Cardiomyopathy Program have extensive experience with cardiomyopathy. Each year, we treat hundreds of children, adolescents and adults with all forms of the condition.

    Our specialized training in pediatric cardiology means that we understand the unique challenges, circumstances and intricacies of working with young people with cardiomyopathy and other heart diseases and disorders. In addition to our medical expertise, we provide patient-centered care that always recognizes your child as an individual—and we offer resources to meet the needs of your entire family.

    With more than 80 cardiac experts on our staff, Boston Children’s operates the largest pediatric heart program in the nation. We treat thousands of children, adolescents and adults who are living with a broad spectrum of cardiac problems—ranging from cardiomyopathy and congenital heart defects  to blood vessel disorders, heart and lung disease and congestive heart failure.

    We use the most sophisticated diagnostic and imaging procedures, including interventional catheterization, and offer dozens of specialized services in such areas as heart valve replacementcardiac anesthesia, robotic surgery and fetal cardiology.

    Our Department of Cardiology and Department of Cardiac Surgery clinicians will work closely with you to determine the right treatment plan for your child’s cardiomyopathy. We consider you an invaluable member of the treatment team, and always welcome your input and questions. 

    What are the parts of the heart?

    Take a look here 

    Cardiomyopathy: Reviewed by Renee Margossian, MD
    © Boston Children's Hospital; posted in 2010

  • Cardiomyopathy is not a single, isolated disease; it’s a term used to classify several separate diseases that affect the heart muscle. The primary forms of cardiomyopathy are: 

    • dilated cardiomyopathy, also called congestive cardiomyopathy. This is the most common type and occurs when the main pumping chamber of the child’s heart muscle becomes too dilated or “stretched out.” Dilated cardiomyopathy renders the heart unable to pump blood effectively.
    • hypertrophic cardiomyopathy, also called hypertrophic obstructive cardiomyopathy, asymmetric septal hypertrophy or idiopathic hypertrophic subaortic stenosis. All of these names describe the same problem: Unlike dilated cardiomyopathy, which makes the heart muscle stretched out, hypertrophic cardiomyopathy makes the heart muscle too thick. Usually, the thickening occurs in the muscle of the left ventricle in the heart, often involving the wall between the heart’s two ventricles.
    • arrhythmogenic right ventricular cardiomyopathy, also called arrhythmogenic right ventricular dysplasia, is a rare form of cardiomyopathy that affects only one in 5,000 people. This type of cardiomyopathy occurs when the muscle of the heart’s right ventricle is replaced by thick or fatty scar tissue. The scarring “scrambles” electrical signals within the heart and can impair the heart’s ability to pump blood.
    • A fourth, rare type of cardiomyopathy is restrictive cardiomyopathy, which causes the heart muscle to become excessively rigid or stiff. This makes it difficult for the ventricles of the heart to properly fill with blood.

    Other facts about cardiomyopathy you may not have known:

    • Some forms of cardiomyopathy run in families.
    • Other times, cardiomyopathy develops because of another medical condition (like undergoing chemotherapy for certain childhood cancers).
    • In many cases, however, there is no clear cause for a child’s cardiomyopathy.
    • Some children with cardiomyopathy display few to no signs of illness at first, while others may be seriously affected by shortness of breath, dizziness and other symptoms from the beginning.
    • Sometimes, children need a heart transplant to manage their cardiomyopathy.

    Causes

    What causes dilated cardiomyopathy?

    It’s important to note that in many cases, dilated cardiomyopathy occurs without a known reason. If your child’s disease has no identifiable cause, it is called an idiopathic dilated cardiomyopathy.

    When the cause can be determined, reasons include:

    • prior myocarditis, an inflammation of the heart muscle that usually stems from a viral infection
    • certain metabolic diseases
    • certain genetic disorders, like muscular dystrophy
    • inheriting the condition from a parent

    Some less common causes of dilated cardiomyopathy are:

    • connective tissue disorders, such as rheumatoid arthritis
    • coronary artery disease
    • diabetes that is not properly controlled
    • obesity
    • substance abuse
    • thyroid disease

    What causes hypertrophic cardiomyopathy?

    Hypertrophic cardiomyopathy has a strong inherited component. At least half of all children with this form of the disease have a parent or sibling with some degree of enlargement in their heart muscle, although these family members may not experience any symptoms themselves.

    Hypertrophic cardiomyopathy results from a defect in the genes that control the manufacture of the proteins of the heart muscle.

    What causes arrhythmogenic right ventricular cardiomyopathy?

    Arrhythmogenic right ventricular cardiomyopathy frequently runs in families. At least 30 to 50 percent of all people with this form of cardiomyopathy also have family members with the disease. Researchers are working to identify precisely which gene mutations and chromosomes are involved in the onset of arrhythmogenic right ventricular cardiomyopathy.

    What causes restrictive cardiomyopathy?

    Causes of restrictive cardiomyopathy may include:

    • chemotherapy treatments for certain cancers
    • radiation treatments to the chest for certain cancers
    • sarcoidosis
    • scleroderma
    • diseases of the heart lining, including endomyocardial fibrosis and the very rare Loeffler’s syndrome
    • too much iron in the heart—this is known as hemochromatosis
    • an abnormal protein buildup, called amyloidosis, in the muscle of the heart
    • tumors in the heart
    • a buildup of scar tissue in the heart for any reason

    Restrictive cardiomyopathy is not typically inherited. Many children have what is called idiopathic restrictive cardiomyopathy, meaning there is no identifiable cause for their disease.

    Signs and symptoms

    What are the symptoms of dilated cardiomyopathy?

    Many children with dilated cardiomyopathy do not display symptoms; the disease is sometimes diagnosed coincidentally—for example, when the child has an echocardiogram for another reason, such as a heart murmur.

    However, when symptoms do emerge, they may include one or more of the following:

    • abdominal pain
    • chest pain
    • chronic fatigue
    • chronic loss of appetite
    • frequent irritability without a visible cause
    • frequent vomiting
    • pale or clammy skin
    • rapid breathing
    • rapid or “racing” heartbeat
    • shortness of breath
    • slow or delayed growth

    What are the symptoms of hypertrophic cardiomyopathy?

    Children with hypertrophic cardiomyopathy may experience symptoms during physical exertion, but their symptoms can also come on suddenly and unpredictably. Common warning signs include:

    • abnormal heart rhythm
    • chest pain
    • dizziness
    • fainting

    What are the symptoms of arrhythmogenic right ventricular cardiomyopathy?
    Arrhythmogenic right ventricular cardiomyopathy is often difficult to diagnose because many people never display warning signs, and can function with almost no disruption to their daily activities unless or until they have an acute onset of symptoms.

    A person will usually show clear signs of having the condition when they are young (either as children, as teens or as adults under the age of 40). Commonly, the diagnosis is made by cardiovascular magnetic resonance imaging (MRI).

    When symptoms are noticeable, they can include:

    • abnormal heart rhythm
    • fainting
    • light-headedness or dizziness
    • “racing” heartbeat
    • shortness of breath
    • swelling in the abdomen
    • swelling in the legs

    What are the symptoms of restrictive cardiomyopathy?

    Symptoms of restrictive cardiomyopathy can vary greatly from child to child. Many children will show no noticeable symptoms, others will have very mild symptoms and still others will demonstrate clear warning signs that become progressively worse if the disease is not treated.

    When they are noticeable, restrictive cardiomyopathy symptoms can include:

    • fatigue
    • persistent coughing
    • shortness of breath while or immediately after exercising
    • shortness of breath at night (while resting or sleeping)
    • shortness of breath while lying flat
    • swelling in the abdomen
    • swelling in the feet or ankles

    FAQ

    Q: Will my child be OK?
    A:  
    Cardiomyopathy is very often a “time will tell” disease; every child has different circumstances, and in each case, the progression of the disease can be unpredictable. Your child’s course of treatment and long-term outlook will depend greatly upon:

    • his age
    • the severity of the disease at the time of diagnosis
    • his tolerance for specific medications or procedures
    • your family’s preferences for treatment

    Q: What makes cardiomyopathy different from other heart diseases?
    A:
    Unlike other forms of heart disease, cardiomyopathy:

    • can occur at the same time as other diseases that affect other parts of the body—not just the heart
    • commonly affects children, adolescents and young adults—not just older people
    • can be progressive, meaning symptoms worsen over time
    • can run in families
    • is relatively rare, affecting about 50,000 Americans of all ages at any given time
    • may necessitate a heart transplant

    Q: Does my child have to cut back on physical activities?
    A:
    Whether your child needs to cut back significantly on activities—or cut back at all—depends greatly on the type of cardiomyopathy she has and her circumstances and symptoms:

    Children with dilated cardiomyopathy generally do not have to restrict their physical exercise, although older children involved in certain sports (especially high-impact sports) may not be able to perform at their prior level of competition. Symptoms usually dictate a child’s ability to participate in physical activities. Your child’s treating clinician must make a specific determination as to which, and to what extent, activities are allowed.

    Children with hypertrophic cardiomyopathy often need to restrict their physical activities—including sports. Your child’s treating clinician must make a specific determination as to which, and to what extent, activities are allowed.

    In general, children with arrhythmogenic right ventricular cardiomyopathy should not engage in strenuous exercise. Your child’s treating clinician will evaluate her individual situation and inform you how much, and which types of, exercise is acceptable. 

    Children with restrictive cardiomyopathy may need to curtail or stop certain physical activities. Your child’s treating clinician should make the determination about which—and to what extent—physical exertion is allowed.

    Q: Can changes to my child’s diet help manage his cardiomyopathy?
    A:
    While diet changes should not be considered substitutes for more involved medical care, children with cardiomyopathy—particularly the restrictive form—can benefit from maintaining a healthy weight and restricting their salt and caffeine intake. Your treating clinician can give you more specific recommendations.

    Q: Can some cancer treatments cause cardiomyopathy?
    A:
    It’s an unfortunate fact that many of the chemotherapy agents that are so beneficial in treating childhood cancers have long-term side effects. Certain chemotherapy drugs—particularly a class of drugs called anthracyclines—have been linked to later development of cardiomyopathy, while restrictive cardiomyopathy has been tied to radiation treatments of the chest for some cancers.

    Nonetheless, many children undergoing chemotherapy or radiation treatment do not develop cardiomyopathy.

    Q: What do I need to look out for once my child has been diagnosed with cardiomyopathy?
    A:
    Parents of children with cardiomyopathy should always be watchful of changes in behavior, appearance, appetite, activity level and respiration.

    You should seek medical help immediately if your child experiences any of the following:

    • chest pain
    • clammy skin or the feeling of a “cold sweat”
    • dizziness
    • fainting
    • heart palpitations
    • irregular heartbeat
    • pale, ashen color in the face
    • racing heartbeat
    • rapid breathing
    • shallow breathing
    • shortness of breath
    • swollen feet, ankles or legs

    Q: Does Boston Children’s offer genetic testing for cardiomyopathy?
    A:
    Yes, Boston Children’s Cardiovascular Genetics Program provides several clinical services to test for heart conditions including cardiomyopathy. The program also offers genetic counseling.

    Q: Will my child need a heart transplant?
    A:
    While a heart transplant may become a necessary treatment option for some children with any of the common forms of cardiomyopathy, not every child with cardiomyopathy will need one.

    Q: Is there a cure for cardiomyopathy?
    A:
    Unfortunately, cardiomyopathy is a chronic condition. There is no treatment that can cure the disease in any of its forms, nor guarantee long-term recovery.

    Depending upon how advanced the disease is at the time of diagnosis, some degree of heart function may be irreversibly lost. The good news is that, when diagnosed early, many forms of cardiomyopathy respond very well to long-term medication use, pacemaker or defibrillator implantation or heart transplant.

    Questions to ask your doctor

    You and your family play an essential role in your child’s treatment for cardiomyopathy. It’s important that you share your observations and ideas with your child’s treating physician, and that you have all the information you need to fully understand the treatment team’s explanations and recommendations.

    You’ve probably thought of many questions to ask about your child’s cardiomyopathy. It’s often very helpful to jot down your thoughts and questions ahead of time and bring them with you, along with a notebook, to your child’s appointment. That way, you will have all of your questions in front of you when you meet with your child’s treating clinician and can make notes to take home with you. (If your child is old enough, you can encourage him or her to write down questions, too.)
     
    Initial questions to ask your doctor might include: 

    • What type of cardiomyopathy does my child have?
    • How did you arrive at this diagnosis?
    • Are there any other conditions my child might have instead?
    • Does my child require further testing or procedures?
    • What is my child’s prognosis?
    • What medications will you prescribe?
    • What are the possible side effects of these medications?
    • Will my child need a pacemaker or defibrillator?
    • Will my child need surgery or a heart transplant?
    • What role should I play in my child’s treatment?
    • How should I talk to my child about this condition and the long-term outlook?
    • How should I explain my child’s condition to others?
    • Do I need to restrict my child’s physical activity?
    • Do I need to make any other changes to my child’s home and school routines?
    • What other resources can you point me to for more information?
  • How is cardiomyopathy diagnosed?

    The process of arriving at a cardiomyopathy diagnosis usually involves several steps. Your clinician will:

    • obtain a thorough medical history by speaking with you, your child (if he is old enough) and your child’s referring physician, and reviewing all relevant lab work and reports
    • give your child a comprehensive physical exam
    • listen to your child’s heart and lungs with a stethoscope
    • order specific tests

    What tests will be done?

    Your clinician may use one or more of the following tests to reach (or rule out) a diagnosis of cardiomyopathy: 

    • blood tests, including tests to measure:
      • B-type natiuretic peptide (BNP), a protein produced in the heart. BNP levels rise when the heart undergoes stress that may cause heart failure.
      • iron levels, which, when elevated, may cause weakening of the heart
      • kidney function
      • thyroid function
    • chest x-rays, which make it possible to view the structure of the heart and detect any enlargement
    • electrocardiogram (EKG or ECG), which measures electrical activity within your child’s heart
    • echocardiography, which uses ultrasound to assess you child’s heart structures and function
    • cardiac magnetic resonance imaging (MRI), which uses a large magnet, radio waves and computer to evaluate the structure and function of your child’s heart and blood vessels
    • stress echocardiography, which uses ultrasound and heart rate monitoring to assess your child’s heart function just before and just after exercise, or during the administration of a drug that mimics the effects of exercise on the heart
    • a stress test, or exercise test, which measures your child’s capacity for physical exertion
    • cardiac catheterization, which uses a small, flexible tube inserted into a vein or artery to provide a detailed view of the heart’s internal structures and accurate measurement of the pressure inside of the heart chambers and vessels.
    • coronary angiography, which uses minimally invasive imaging technology to map the veins or arteries in your child’s heart  
  • Boston Children's Hospital cardiologists, cardiac surgeons and nurses, cardiac imaging professionals and other clinicians have years of expertise in treating not only the multiple forms of cardiomyopathy in children, but also the various stages of the disease.

    We use minimally invasive techniques—medical and surgical procedures that involve small incisions and miniaturized cameras and tools—whenever possible. In fact, Boston Children's has a Center for Minimally Invasive Surgery that is a global leader in creating and refining new surgical approaches.

    Your child's exact course of treatment will be determined by the type of cardiomyopathy she has, her specific symptoms and your family's preferences.

    Treatment options for dilated cardiomyopathy

    Once your child is diagnosed with dilated cardiomyopathy, the progression of treatment will depend upon how well he or she is doing. A child with virtually no symptoms might be able to continue without medication or further procedures for the time being, checking in with the cardiologist at least every six months for monitoring and to gauge the likely progression of the disease.

    A child with more serious symptoms may need additional tests to give the treatment team more detailed information about how the cardiomyopathy is affecting the heart. Many children with dilated cardiomyopathy do very well with medication alone. Others need surgery to improve the function of valves that may leak as a result of dilated cardiomyopathy, and in the most severe cases, some children need a heart transplant.

    Treatment options for hypertrophic cardiomyopathy

    The progression of hypertrophic cardiomyopathy can vary greatly from child to child. Medications are often very helpful in regulating the child's heartbeat and relieving symptoms such as chest pain.

    Among the surgical treatments for hypertrophic cardiomyopathy are:

    • the implantation of a pacemaker
    • removal of part of the enlarged heart muscle
    • a heart transplant

    Treatment options for arrhythmogenic right ventricular cardiomyopathy

    As with the other forms of cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy progresses in markedly different ways from child to child. Some children will need to cut back their involvement in sports and other physical pursuits, while others will have little disruption to their daily activities.

    Medication to prevent ventricular arrhythmias—abnormal electrical impulses within the ventricles of the heart that can send the heart into an abnormal rate or rhythm of beats—has proven very effective. Some patients benefit from having an implantable defibrillator placed to prevent serious consequences of an arrhythmia.

    Treatment options for restrictive cardiomyopathy

    Treatment for restrictive cardiomyopathy can be very complex, and the exact treatment plan will depend considerably on:

    • the cause of the disease (if known)
    • the age of the child
    • the child's individual symptoms and circumstances

    Some of the treatment options prescribed for restrictive cardiomyopathy can include medication and in the most severe cases, heart transplant.

    Cardiomyopathy treatments

    Depending upon your child's individual symptoms and the stage of the disease at the time of diagnosis, your treatment team may recommend one or more of the following treatment options. These treatments are often used for any of the most common forms of cardiomyopathy:

     Medication

    • ACE inhibitors– drugs that dilate blood vessels in the body, fighting the constricting effect caused by heart failure. ACE stands for “angiotestin converting enzyme.” Common examples of ACE inhibitors include:
      • benazepril (Lotensin)
      • captopril (Capoten)
      • enalapril (Vasotec)
      • moexipril (Univasc)
    • antiarrhythmic medications– drugs that combat the abnormal heart rhythms caused by irregular electrical activity within the heart. Common examples are:
      • Tambocor (flecainide)
      • Procanbid (procainamide)
      • Codarone (amiodarone)
      • Betapace (sotalol)
    • beta blockers– drugs that block certain chemicals from binding to nerve receptors in the heart. This slows the heart rate and lowers blood pressure. Common examples are:
      • propranolol (Inderal)
      • atenolol (Tenormin)
      • metoprolol (Lopressor, Toprol XL)
      • carvedilol (Coreg)
    • blood thinners, or anticoagulants– drugs that help prevent the formation of blood clots, especially in children with the dilated form of cardiomyopathy. Common examples are:
      • aspirin
      • Coumadin, or Warfarin
    • diuretics– drugs that cause increased urination, preventing the buildup of fluid in the body. Diuretics aid breathing by reducing fluid in the lungs, and may also be helpful in treating scar tissue on the heart. Common examples include:
      • bumetanide (Bumex)
      • furosemide (Lasix)

    Learn more about medications for cardiomyopathy.

    Defibrillators

    For some children with cardiomyopathy—particularly the hypertrophic form—an implantable cardioverter-defibrillator (ICD) can be a life-saving implement. This tiny instrument, only about the size of a pager, is implanted in the chest, where it monitors the child's heartbeat. In the event of an arrhythmia, the defibrillator will administer a precise electrical pulse to restore normal heart rhythm.

    Pacemakers

    Pacemaker implantation can be a helpful, minimally invasive option for some children with cardiomyopathy. The pacemaker—a small electronic device—is inserted directly under the skin, where it sends electric signals to the child's heart, controlling and monitoring the heart rate. The procedure can be performed under local anesthesia in a matter of hours.

    Radiofrequency ablation

    Radiofrequency ablation is another type of minimally invasive treatment that can be very effective for some children with the arrhythmogenic right ventricular form of cardiomyopathy. A small, needle-like probe is inserted into the scarred tissue of the heart muscle, sending out radiofrequency waves that burn away the scarring.

    Surgical removal of some heart muscle

    In serious cases of hypertrophic cardiomyopathy, the treatment team may elect to perform a surgery called a septal myectomy or septal myomectomy. This procedure involves the removal of a portion of the thickened muscle in the heart, widening the channel in the heart's ventricle that leads to the aortic valve. The procedure has a very good success rate, and most children experience improved blood flow throughout the heart and body.

    Heart transplant

    Children with the most severe cases of cardiomyopathy—in any of the forms of the condition—may need a heart transplant if other methods prove insufficient in managing their symptoms. Given the shortage of donor organs across the country, your child may have to wait for weeks or months for an available heart.

    During the waiting period, a heart-assist device may be used to support the heart and provide essential rest and recovery time.

    Learn more about Children's Heart Transplant Program. 

    Coping and support

    When your child has cardiomyopathy, you are faced with many concerns and questions. Not only are you focused on meeting all of your child's medical needs; you are also confronting a significant emotional and psychological challenge that can affect every member of your family.

    In addition to the clinical information offered on this page, Children's has several other resources designed to give your family comfort, support and guidance:

    • Boston Children's Behavioral Medicine Clinic helps kids who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:
      • being sick
      • facing uncomfortable procedures
      • handling pain
      • taking medication
      • preparing for surgery
      • changes in friendships and family relationships
      • managing school while dealing with an illness
      • grief and loss
    • The Cardiac Experience Journal was designed by Boston Children's psychiatrist-in-chief David DeMaso, MD, and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about going through cardiac disease, heart transplants and many other medical experiences.
       
    • Boston Children's Psychiatry Consultation Service is comprised of expert and compassionate pediatric psychologists, psychiatrists, social workers and other mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:
      • short-term therapy for children admitted to one of our inpatient units
      • parent and sibling consultations
      • teaching healthy coping skills for the whole family
      • educating members of the medical treatment team about the relationship between physical illness and psychological distress
    • Boston Children's Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide”. Topics in the booklet include:
      • talking to your child about his or her condition
      • preparing for surgery and hospitalization
      • supporting siblings
      • taking care of yourself during your child's illness
      • adjusting to life after treatment
    • Boston Children's Center for Families is dedicated to helping families locate the information and resources they need to better understand their child's particular condition and take part in their care. All patients, families and health professionals are welcome to use the center's services at no extra cost. The center is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
    • The Boston Children's chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—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 child's treatment.
    • For children and families affected by life-threatening illness, our Pediatric Advanced Care Team (PACT) is available to provide supportive treatments intended to optimize the quality of life and promote healing and comfort. In addition, PACT can provide emotional support and help arrange end-of-life care when necessary. Please call 617-632-5042 for more information.
    • Boston Children's Integrative Therapies Team provides a number of services for hospitalized children, their families and their caregivers, including:
      • massage therapy
      • acupuncture
      • yoga
      • therapeutic touch
    • Boston Children's International Center is a dedicated resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.

    Helpful links

    Please note that neither Boston Children's Hospital nor the Cardiomyopathy Program at Boston Children's unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

    Helpful links for parents and families

    Helpful links for teens

    Helpful links for younger children

  • At Boston Children's Hospital, our care is informed by our research, and our discoveries in the laboratory strengthen the care we provide at each child's bedside.

    Boston 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.

    Among our current research projects with promise for treating cardiomyopathy are: 

    Understanding family ties to hypertrophic cardiomyopathy

    Working with colleagues at Brigham and Women’s Hospital, Children’s researchers are examining common characteristics among families with a genetic predisposition toward hypertrophic cardiomyopathy. The team is leading a multi-center registry of children and adults who carry the gene for this type of cardiomyopathy, in hopes that studying their genetic makeup will help them identify the exact mutations influencing the onset of the disease.

    Reversing heart damage with a simple injection

    A team of Boston Children’s researchers—led by Bernhard Kuhn, MD, of the Department of Cardiology—have demonstrated that a growth factor called neuregulin1 (NRG1) can encourage the growth of muscle and the restoration of function after damage to the heart. Mice who received a simple injection of NRG1 have experienced considerable reversal of pre-existing damage caused by heart attacks.

    Evaluating the effectiveness of medication in delaying hypertrophic cardiomyopathy

    Researchers in Boston Children’s Department of Cardiology and at Brigham and Women’s Hospital are conducting medication trials for patients who carry the gene for hypertrophic cardiomyopathy, but whose echocardiograms are normal. The aim of the project is to develop new drug therapies capable of delaying the onset of symptoms.

    Clinical trials

    Boston Children’s is known for pioneering some of the most effective diagnostic tools, therapies and preventive approaches in pediatric cardiology. A significant part of our success comes from our commitment to research—and to advancing the frontiers of mental health care by conducting clinical trials.

    Boston Children’s coordinates hundreds of clinical trials at any given time. Clinical trials are studies that may involve:

    • evaluating the effectiveness of a new drug therapy
    • testing a new diagnostic procedure or device
    • examining a new treatment method for a particular condition
    • taking a closer look at the causes and progression of specific diseases

    Boston Children’s is involved in several multi-site clinical trials and studies focusing on pediatric cardiology and cardiac surgery, in particular. While children must meet strict criteria in order to be eligible for a clinical trial, your child may be eligible to take part in a study. Before considering this option, you should be sure to:

    • consult with your child’s treating physician and treatment team
    • gather as much information as possible about the specific course of action outlined in the trial
    • do your own research about the latest breakthroughs relating to your child’s condition

    If your physician recommends that your child participate in a clinical trial, you can feel confident that the plan detailed for that study represents the best and most innovative care available. Taking part in a clinical trial at Boston Children’s is entirely voluntary. Our team will be sure to fully address any questions you may have, and you may remove your child from the medical study at any time.

    The role of stem cells in the fight against heart disease

    Learn more about our research in this vital area. 

    Follow pediatric care's long history in 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, Boston Children’s has gained recognition around the globe for our leadership in pediatric cardiology, and we continue to make critical advances in the field. Follow our timeline of Boston Children’s innovations in heart care.

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