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Dilated Cardiomyopathy (DCM)
Children’s heart conditions can’t be prevented, but a lot can be done to improve 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 with a heart problem can be quickly diagnosed and treated. At the Cardiac Center, we specialize in the treatment of heart problems, including cardiomyopathies and heart failure.
When it comes to dilated cardiomyopathy (or “DCM”) in children, we’re here to ease your concerns, answer your questions, and give your child the best possible chance for a healthy future.
Dilated cardiomyopathy (DCM) in children is a disease in which, due to abnormalities in the muscle, one or both ventricles in a child’s heart become enlarged and contract poorly. A variety of processes that result in myocardial (that is, heart muscle) damage can lead to dilated cardiomyopathy:
- coronary artery disease
- familial (inherited) cardiomyopathy
- inherited diseases (including Becker and Duchenne muscular dystrophies, among others)
But, most often, the cause of dilated cardiomyopathy (DCM) in children isn’t known. Although ventricular enlargement is, at first, adaptive (that is, it allows the heart to continue to pump as much blood even though it has become weaker and isn’t able to pump as strongly) over time, the dilatation of the ventricles becomes maladaptive (unable to adapt) and the ventricle becomes less efficient and unable to supply enough blood to the body.
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:
Dilated cardiomyopathy (DCM) in children may be diagnosed at any age but, unfortunately, they don’t have any symptoms until they develop heart failure. The exact symptoms vary by age — and they may come on suddenly, although more often they develop slowly. Typically, infants will have fast heart rates and breathing and may not feed very well. They usually have trouble gaining an appropriate amount of weight. Older children will often have fatigue and shortness of breath. They may also complain of nausea and “flu-like” symptoms.
The enlarged heart present in dilated cardiomyopathy (DCM) in children is often visible on chest X-rays, but we confirm the diagnosis using an echocardiogram (or “echo”). An echo is a completely safe and painless test that uses ultrasound (sound waves) to build a series of pictures of the heart.
Most children will also require a cardiac catheterization to evaluate the pressures and flow of blood within the heart (called “hemodynamics”). They may also have a biopsy done during the catheterization.
In most cases, we treat dilated cardiomyopathy (DCM) in children, at first, with medicines. The goals of medical therapy are to improve children’s symptoms and quality of life as well as attempt to prevent the ventricles from becoming more enlarged.
The medicines we usually prescribe include:
- Lasix or other diuretics (to help prevent fluid retention)
beta-blockers (to decrease the heart rate and keep the heart from working too hard)
- ACE inhibitors (to lower blood pressure to decrease the amount of work being performed by the heart)
Both beta-blockers and ACE-inhibitors also seem to help the heart muscle remodel in ways that improve heart function in the long term. While children are in the hospital, we may also use other medications to help the heart contract.
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.
With the increasing use of mechanical pumps to take away the work of the heart and allow it to “rest,” it’s more common for children with dilated cardiomyopathy to have adequate heart function now than in the past.
But most children won’t significantly recover heart function after implantation of a VAD. In many cases, heart transplantation provides the best option for treating heart failure in the long term. In this operation, our heart surgeons remove the diseased heart and replace it with a donor heart. Children who need a heart transplant will have to take medication their whole lives to prevent rejection of the donor heart.
We’ll usually continue to treat dilated cardiomyopathy in children throughout their lifetime. When children need a ventricular assist device (“VADs”) to assist with the function of their heart, they’ll often need to remain in the hospital until a donor heart becomes available, and they’re ready for transplant.
In certain cases, especially in older children, we may be able to use a pump that allows us to discharge patients from the hospital. In either case, in addition to standard medical treatment of heart failure, children often need to be on blood thinners while being supported by the VAD.
After a heart transplant, most children are able to function excellently and have a normal quality of life. They will need to take medications to prevent rejection of the new heart for the rest of their lives.
If your child has dilated cardiomyopathy, 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