Pediatric Heart Failure Program

Heart failure in children is complicated and often has very different causes and treatments than seen in adult patients. These children require specialized care to prevent, diagnose and manage the condition. That’s why, in 2006, a team of dedicated pediatric heart specialists created the Pediatric Heart Failure Program at Children’s Wisconsin.

The team uses a multidisciplinary approach, taking advantage of all the expertise in the Herma Heart Institute and throughout Children’s Wisconsin, to provide family-centered care for children with heart disease and heart failure, as well as adults with congenital heart disease (present at birth).

Causes of heart failure in children

It is widely recognized that heart failure is a huge problem in adults, most commonly as the result of coronary artery disease and chronic hypertension. In children, the causes (and therefore the treatments) of heart failure are more diverse than seen with adults. Some of the most common causes are congenital heart disease, inherited or acquired cardiomyopathies, muscular dystrophy and other neuromuscular disorders, and auto-immune or infectious myocarditis. Herma Heart Institute has specialized programs for treating these and other causes of heart failure in children.

Congenital heart disease is an especially complicated diagnosis as it relates to heart failure in children. In some patients, congenital heart disease causes heart failure. In other patients, heart failure can be a complication of circulation-improving treatments for congenital heart disease. In these cases, the term “heart failure” is misleading because the heart actually may be working well; it is the related heart and lung problems that cause the symptoms.

Our multidisciplinary approach to pediatric heart failure allows us to bring a coordinated team of experts together to make the right diagnosis and provide the safest, most effective approach to treatment. Our patients and their families are part of this team, all working openly and honestly together to provide the best care for your child.

Subspecialties for heart failure in children

Neuromuscular Disorder Clinic

Muscular dystrophy, multiple sclerosis and other neuromuscular disorders affect the nerves that control a child’s voluntary muscles, like the arms and legs. These disorders often lead to muscle weakening, which can impact heart function. The Pediatric Heart Failure Program team helps care for children with neuromuscular disorders with a family-friendly approach that coordinates all of the child’s specialty care into one clinic visit. 

That means neuroscience experts in neuromuscular disorders, lung specialists (pulmonologists), cardiologists, genetics counselors and physical therapists are all available to meet with you and your child in one visit in one location. This not only makes care easier, but also makes sure all aspects of your child's care are as coordinated as possible.

Cardiomyopathy Clinic

Cardiomyopathy can simply be defined as "sick heart muscle." There are many types of cardiomyopathy, so our Pediatric Heart Failure Program team works hard to identify the specific type of your child’s cardiomyopathy (including dilated, hypertrophic, restrictive and non-compaction). They will also work to identify related problems and, whenever possible, the specific cause of the disease. We are proud to have our program recognized as a Cardiomyopathy Center of Care by the Children's Cardiomyopathy Foundation. 

The Pediatric Heart Failure Program also offers a coordinated program for family screening, which includes clinical and genetic testing. Exercise stress testing  frequently is also performed to objectively assess aerobic capacity and to help patients and families know what level of exercise is appropriate.

Fontan Survivorship Program

Our Fontan Survivorship Program serves children, adolescents, and adults who are living with single ventricle heart disease, such as hypoplastic left heart syndrome. We are leaders in the care and management of Fontan circulation through our multidisciplinary program and our commitment to advancing research through national collaborations. Learn more about this program

Evaluation and treatment

The Pediatric Heart Failure Program at Children's Wisconsin uses a variety of methods of evaluation and treatment:

Echocardiography – (3D echo, Doppler imaging)

Echocardiography provides detailed views of your child’s heart anatomy and how it functions so that we can better understand the causes of and potential treatments for your child’s heart failure. With state-of-the-art technology and a highly skilled team of nationally recognized experts, our echocardiography laboratory serves as the core lab for many national clinical and research efforts.

Learn more about echocardiography

ECG/Holter monitoring

Electrocardiograms (ECGs or EKGs) help detect heart rhythm problems, which can cause or worsen heart failure symptoms. ECGs give a snapshot of the heart’s electrical activity. Holter monitors measure the electrical activity over the course of several hours or days. Identifying and managing cardiac rhythm problems can improve heart function and quality of life for patients with heart failure.

Learn more about ECGs

Cardiac resynchronization

Heart muscle disease or abnormalities of the heart’s electrical system can get the heart’s pumping action out of synchronization, resulting in less effective pumping of the blood. In some patients, a pacemaker can be used to improve the timing of the heart’s contractions and its pumping ability, which helps relieve heart failure symptoms. This “cardiac resynchronization” can, in some cases, not only improve the heart function in the short term, but also lead to long-term improvement.

Medical management

While children are not just “small adults,” many of the same medications that help adult patients with heart failure can also be used for children. Careful use of these medications can improve heart failure symptoms and can, for some children, lead to long-term improvement or even recovery of heart function.

Surgical management

Sometimes surgery can be the best approach to helping your child manage the symptoms of heart failure. Common procedures include repair or replacement of leaking heart valves, repair of scar tissue from previous heart surgeries, or the use of mechanical circulatory support. Our Pediatric Heart Surgery Program has one of the highest survival rates in the country.

Internationally recognized as leaders in the care of children with the most complex forms of congenital heart disease, our pediatric heart surgeons collaborate with our pediatric heart failure specialists to identify the right surgical approach to improve your child’s heart function and overall health.

Magnetic resonance imaging (MRI)

High-resolution 3D images available through magnetic resonance imaging (MRI) allow our care team to see your child’s heart anatomy and function more clearly than ever before. With MRI, we get highly accurate measurements of the size of blood vessels and the heart’s structures. We can also measure how much the heart pumps and how well it pumps, allowing us to individualize treatment plans and monitor a patient’s progress over time. When necessary, our MRI experts can use contrast as part of the study in order to show areas of inflammation or scarring in the heart.

Learn more about cardiac MRI

Cardiac catheterization

Cardiac catheterization is a diagnostic tool that allows pediatric heart care specialists to measure the pressure and resistance in the heart and lungs to guide treatments. Cardiac catheterization can also be used to treat problems, particularly in children with congenital heart disease. Our pediatric interventional cardiologists can do procedures to open or close abnormal blood vessels, or to repair or replace vascular stents and valves.

In our state-of-the-art hybrid catheterization suite, these procedures are performed in collaboration with our cardiac surgeons and cardiac anesthesiologists, allowing us to provide highly complex procedures in the safest possible setting.

Learn more about cardiac catheterization

Exercise stress testing

Heart failure is definitely not a "one size fits all" disease, and exercise stress testing allows us to better understand the limits and effects of heart disease on your child’s ability to do normal activities. Children with heart failure can benefit from appropriate levels of aerobic exercise, but finding the right level can be very difficult to figure out, especially in a child. Stress testing can be performed in children as young as five years of age. It can help us measure how much exercise is safe and healthy for your child. This information helps families make decisions about appropriate levels of activity and to see progress over time.

Mechanical circulatory support and heart transplant for advanced heart failure

If your child has a more severe form of heart failure, he or she may not have enough heart strength to support the body’s needs. Symptoms of heart failure may continue to get worse, and may lead to the failure of other organs. Fortunately, Herma Heart Center’s team of critical care specialists, cardiologists, pediatric heart surgeons, anesthesiologists and other Children’s Wisconsin specialists are experts in care strategies for patients with advanced heart failure.

Our experts can use IV medications, mechanical circulatory support devices (including ventricular assist devices, or VADs) to help patients recover or bridge them to heart transplantation. Patients will be cared for in our dedicated Cardiac Critical Care Unit, which has the most advanced forms of support for children with advanced heart failure.

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