Neuromuscular disorders (including muscular dystrophies)
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 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 the patient’s care are as coordinated as possible.
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.
The Pediatric Heart Failure Program also offers a coordinated program for family screening, which includes clinical and genetic testing. Exercise stress testing frequently is performed, too, to objectively assess aerobic capacity and to help patients and families know what level of exercise is appropriate.
Fontan Survivorship and Advanced Therapies Program
Our Fontan Survivorship Program was created specifically to care for children, adolescents, and adults with single ventricle heart disease, such as hypoplastic left heart syndrome. Although survival and outcomes after the Fontan procedure have improved, some patients may develop health problems later in life. These "Fontan-associated" problems may impact not just the heart, but also other parts of the body such as the lungs, gastrointestinal system, liver, growth, and other aspects of the child’s health and development. Our Fontan Survivorship Program is staffed by a multidisciplinary team of experts trained to provide the best possible care for children and adults who have had the Fontan procedure.