About the Fontan Rehabilitation, Wellness, Activity and Resilience Development (FORWARD) Program
Single ventricle heart defects are some of the most complex cardiovascular malformations. Without care, these conditions can be lethal. Over the past 40 years, clinicians have developed a strategy for survival for children with single ventricle heart defects that includes multiple cardiac operations in infancy and childhood, culminating in the Fontan operation.
The Fontan is a surgical procedure in which a child's blood flow is rerouted. The single working ventricle is assigned the task of delivering blood to the body, while the veins carrying low oxygenated blood are connected directly to the vessels to the lungs. Blood flows passively into the lungs, without benefit of a ventricular pump. This results in a unique physiology; a unique state called a “Fontan circulation.”
As surgical outcomes for single ventricle patients continue to improve and most patients live into adulthood, we've learned the Fontan circulation can have long-term effects on many organ systems and often impacts a child's growth, development and mental health.
The Fontan Rehabilitation, Wellness, Activity and Resilience Development (FORWARD) Program at Children's Hospital of Philadelphia (CHOP) was created to evaluate these needs, to build resilience in patients, and improve the quality and duration of their lives.
The FORWARD Program enhances CHOP's extensive experience gathered from our Single Ventricle Survivorship Clinic. Since 2011, our team has partnered with patient families and referring clinicians to provide breakthrough care for more than 600 children, adolescents and young adults with Fontan circulation.
“Children's Hospital of Philadelphia is at the forefront of care.”
Who we treat
We specialize in long-term surveillance, treatment and consultation services for individuals with single ventricle defects and Fontan circulation who are more at risk of developing the following conditions or complications:
- Single ventricle-specific cardiac problems such as ventricular dysfunction, valvular dysfunction, Fontan pathway obstruction
- Protein-losing enteropathy
- Plastic bronchitis
- Fontan-associated liver disease (liver fibrosis or scarring)
- Cyanosis (low oxygen levels, blueness)
- Blood clotting disorder
- Hemoptysis (coughing blood)
- Immune dysfunction
- Poor growth
- Delayed development
- Nutritional deficiency
- Exercise intolerance
- Psychological stress, anxiety and depression
What we offer
The FORWARD Program provides:
- Comprehensive patient evaluations by experts from cardiology, hepatology, immunology, endocrinology, gastroenterology, and many other specialties with practitioners all familiar with the unique, special needs of a Fontan circulation
- Consultations with exercise, nutrition, social work and mental health specialists
- Management of specific complications, such as protein-losing enteropathy, plastic bronchitis, hemoptysis, liver pathology and failing Fontan circulation
- Coordination of care and promotion of wellness
- Personalized recommendations for patients based on individual needs, and in close coordination with referring physicians
Additionally, our program is closely integrated with other world-class programs within the CHOP Cardiac Center including Heart Failure and Transplant Program, the Jill and Mark Fishman Center for Lymphatic Disorders, Cardiothoracic Surgery and other services. Having multiple clinical experts under one roof allows for coordination between specialties and personalized care for patients.
“At CHOP, you feel like you belong to family.”