Children with complex congenital heart defects (CHD) are now surviving neonatal and infant surgery with a frequency thought to be impossible only a generation ago.
In the United States, over 35,000 infants are born each year with CHD, and more than a third of these infants are expected to undergo temporary or corrective surgical interventions in the first year of life.
Advances in medicine and surgery have allowed the ability to “mend” children born with even the most complex congenital heart defects. The increasing number of survivors has created a growing population of children entering our school systems. As these children grow, so does our understanding of, and attention to, the long-term effects of their disease and treatment.
As a group, children with complex CHD (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. This does not mean that all children with CHD have these difficulties, but the number of children is much higher than that seen in the general population.
Neurodevelopment issues may include problems affecting:
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.
The NeuroCardiac Care Program (NCCP) at The Children's Hospital of Philadelphia was created to provide screening, evaluation and ongoing coordinated care for children with complex congenital heart defects who are at risk for neurodevelopmental issues. Identifying problems early offers the best opportunity for intervention and treatment, to help each child develop to his or her fullest potential. The NCCP offers comprehensive evaluations at scheduled intervals and care coordination.
The NeuroCardiac Care Program provides screening, evaluation and coordinated care from a multidisciplinary team of experts that includes:
The NCCP supplements the care from a child's primary physician and pediatric cardiologist. Our team is focused on the neurological aspects of your child's development. We partner and communicate frequently with a child's other care providers on a routine basis.
The outlook for our 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 continue to pursue 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. The Children's Hospital of Philadelphia provides a unique setting for the NeuroCardiac Care Program, with its combination of exceptional patient care resources and exceptional research capabilities.
To learn more about the program, please contact Kaitlyn Daniels, RN, program manager at 267-426-8186.
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