The Pediatric Heart Failure and Transplant Program treats children who have primary cardiomyopathies or have developed heart failure as a result of a congenital heart defect.
Our diverse team of specialists includes pediatric cardiologists, heart surgeons, nurses, geneticists, psychiatrists, neurologists, pharmacists, social workers and child life specialists, all with expertise in pediatric medicine. Together, we offer families a multidisciplinary approach to care at one of the most advanced programs for pediatric heart disease in the world.
Our team partners with the child’s entire family. We encourage open communication, welcome all questions about any aspect of their child’s care and are always available to explain the treatment plan and to re-evaluate a child as necessary. We also encourage each family to maintain a relationship with their referring physician, who is an integral part of their child’s care.
Some patients may see us only for an evaluation, while others may return for further therapy, including surgery or heart transplantation. In all cases, we will work with families and their physicians to provide the highest quality care.
What to Expect
When a family is referred to the Pediatric Heart Failure and Transplant Program, we arrange for an initial evaluation that usually lasts about three hours. Prior to the visit, the clinic coordinator gathers important information from the referring physician and the child’s parents to help determine which tests will be recommended.
While a family may be given preliminary information and perhaps treatment guidelines at the end of this visit, the full diagnostic evaluation is not complete until all the test results have been reviewed and the entire medical team has met to determine treatment recommendations. After this review, the pediatric heart failure cardiologist will discuss results of the evaluation and treatment plan with both the family and the referring physician.
Additionally, since we are involved in research, the child will be offered the chance to participate in any clinical trials that are appropriate. The clinical coordinator and cardiologist will discuss these options with the family. Participation in research is purely voluntary and deciding not to participate in a study does not affect the care a child receives from our team.
All of this is part of our comprehensive program – and world-class care.
Cardiomyopathy translates to “heart muscle disease.” Children with cardiomyopathy have hearts that are bigger or stiffer than they should be, and this can sometimes change how well their hearts pump blood. There are three main types of cardiomyopathy: dilated cardiomyopathy, where the heart is enlarged; hypertrophic cardiomyopathy, where the heart muscle is thick; and restrictive cardiomyopathy, where the heart muscle is stiff.
Heart failure is when the heart is not pumping blood normally and can present with symptoms such as tiredness, breathing trouble, racing heart rate, leg swelling, dizziness, nausea or belly pain. Since babies and young children cannot always tell others how they feel, many children are not diagnosed with cardiomyopathy until symptoms of heart failure appear. In children without symptoms, cardiomyopathy may occasionally be detected during a routine pediatric exam. When cardiomyopathy is suspected, a full evaluation is necessary to help diagnose and treat the disease. In most cases, the cause of cardiomyopathy is unknown. Sometimes, cardiomyopathy occurs as a result of a metabolic or genetic problem.