About the Cardiac Kids Developmental Follow-up Program
As a group, children with complex congenital heart disease (CHD severe enough to require surgery or other interventions in the first few months of life) have a higher likelihood of experiencing problems related to neurodevelopmental issues compared to children without CHD. The Cardiac Kids Developmental Follow-up Program at Children's Hospital of Philadelphia was created to provide continued care for these children.
The program provides screening, evaluation and coordinated care from a multidisciplinary team of experts that includes cardiologists, pediatricians, nurses, psychologists, social workers, and physical, speech and occupational therapists. These experts work together to:
- Screen for at-risk children
- Offer neurological and developmental evaluation, diagnosis and intervention
- Help families find programs and resources in their communities
- Provide education for pediatricians, pediatric cardiologists and other community healthcare providers to increase understanding of the needs of children with CHD
- Establish international guidelines for neurodevelopmental evaluation and care of children with complex congenital heart defects
- Develop effective tracking mechanisms to help us learn and refine care for future patients
The Cardiac Kids Developmental Follow-up Program supplements the care provided by your child's primary physician and pediatric cardiologist. Our team is focused on the neurological aspects of your child's development, and we partner and communicate with your child's other care providers on a routine basis.
Long-term effects of CHD
In the United States, over 35,000 infants are born each year with congenital heart disease. Advances in medicine and surgery have given doctors the ability to “mend” children with even the most complex congenital heart defects. But as the number of survivors entering our school systems continues to grow, so does our understanding of the long-term effects of their disease and treatment.
Some of the neurodevelopmental issues that may affect children with complex CHD include problems affecting:
- Social interaction
- Motor skills, both large (clumsiness, coordination) and fine (drawing, cutting, handwriting)
- Academic performance
- Speech and language development
As a world leader in pediatric cardiac care, we believe it is our responsibility at The Children's Hospital of Philadelphia to continue pioneering care for these children.
Hope for every child
The outlook for children with CHD remains quite optimistic. The best way to improve the outcomes for future generations is a continued partnership between patients, parents, researchers, nurses and physicians.
Advocacy at the government level for continued research funding by physicians, parents and patients is crucial to pursuing the causes and treatment of heart disease in children, as well as the secondary effects on the brain and quality of life.
Finally, if families and children are willing, voluntary participation in clinical research studies remains the cornerstone of the process. Children's Hospital of Philadelphia provides a unique setting for the Cardiac Kids Developmental Follow-up Program, with its combination of exceptional patient care resources and exceptional research capabilities.