Children’s heart conditions can’t be prevented, but a lot can be done to improve and often completely repair their hearts at any age. Thanks to advanced technology and the pediatric heart experts at the Nemours Cardiac Center (based at Nemours/Alfred I. duPont Hospital for Children), most children born with a heart problem — even newborns only hours or days old — can be quickly diagnosed and treated right when it matters the most. At the Cardiac Center, we specialize in the treatment of heart problems, including cardiomyopathies and heart failure.
If your child’s been diagnosed with cardiomyopathy, we’re here to ease your concerns, answer your questions, and give your child the best possible chance for a healthy future.
Cardiomyopathy in children is a disease in which a child’s heart muscle (called the “myocardium”) doesn’t function well. There are several types of cardiomyopathy (some more common than others) — and how the heart functions in each type varies from child to child. But in all of types, there’s a problem with the muscle itself, rather than in the structure of the heart (as with congenital heart disease).
People of all ages can have cardiomyopathy. It can be passed down through families (inherited) or developed from causes such as infections, metabolic disorders, coronary artery disease and nutritional deficiencies. Drug and alcohol abuse and exposure to toxins can also cause cardiomyopathy in children. However, the cause often isn’t known (this is called “idiopathic cardiomyopathy”).
Cardiomyopathies may be either:
- primary, when the cells of the heart are abnormal
- secondary, when the cells were normal but other diseases, medicines or toxins cause damage to the heart muscle cells
Cardiomyopathy in children is a serious condition and, if left untreated, can lead to:
- a life-threatening arrhythmia
- heart valve problems
- blood clots
- heart failure
There’s usually no cure for cardiomyopathy in children, but it can be treated. Lifestyle changes, medications and surgically implanted devices can help manage symptoms and stop the disease from getting worse. In severe cases, a heart transplant may be necessary. Cardiomyopathy is the most common reason for heart transplants in children and teens.
Types of Cardiomyopathy in Children
There are several types of cardiomyopathy, including:
- dilated cardiomyopathy
- hypertrophic cardiomyopathy
- restrictive cardiomyopathy
- a variety of much rarer types, including a condition called “arrhythmogenic right ventricular dysplasia”
Although all types of cardiomyopathy are the result of damage to the heart muscle, their symptoms, treatments and outlook are different.
How Does the Heart Normally Work?
When your child has a congenital heart defect, there’s usually something wrong with the structure of the heart. In order to understand your child’s condition, it can help to know how the heart should work normally.
Learn More About Normal Cardiac Anatomy »
Nemours’ experts at KidsHealth.org also offer these helpful resources to help both you and your child understand how the heart works:
Although some children, such as those with hypertrophic obstructive cardiomyopathy, may develop a heart murmur, most with cardiomyopathies will get medical attention after developing symptoms of heart failure, including:
- rapid heart rate
- rapid breathing
- fluid retention
- difficulty breathing
- in infants, difficulty feeding and poor weight gain (also known as “failure to thrive”)
Although surgical therapy to relieve obstruction may be important in hypertrophic obstructive cardiomyopathy, in most cases, our Nemours Cardiac Center experts will use medical treatment to address children’s symptoms.
When medicines are no longer enough to help cardiomyopathy in children, there are surgical options for heart failure treatment. These include either mechanical circulatory support devices or heart transplantation. Mechanical circulatory support devices (also often called “ventricular assist devices,” or “VADs”) are pumps that replace the function of the heart. There are a variety of different types of pumps that can be used in different children. At the Nemours Cardiac Center, we have many pumps available, from ones designed for newborns to pumps for teens and adults. Some of the pumps support children for days or weeks, and some pumps can even go home with children who need them.
In many cases, heart transplantation provides the best option for treating heart failure in the long-term. In this operation, we remove the diseased heart and replace it with a donor heart.
Although some forms of cardiomyopathy in children may resolve, most are lifelong diseases that can be managed but not cured with medications. Children who get a heart transplant will need lifelong medication to prevent rejection of the donor heart.
When it comes to cardiomyopathy in children, know that at the Nemours Cardiac Center we’re here to give your child the very best, most comprehensive and compassionate care. Our goal is to guide your family, from start to finish, through your child’s heart disease journey — and to help your child live the healthiest, most fulfilling life possible.
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Information for Patients
Outpatient Services and Inpatient Units: (302) 651-6660
After 5 p.m. and Weekends:
Cardiac Intensive Care Unit: (302) 651-6644
General Inpatient Unit, 2B: (302) 651-6690