Imagine being told your newborn needed open-heart surgery. Imagine being told your baby had a congenital heart defect and would be spending months of their lives in a hospital. Imagine your child enduring multiple surgeries and facing physical and developmental limitations.
Congenital heart disease (CHD) is one of the least recognized and least funded of all childhood diseases. One in 100 babies are born with a congenital heart defect, yet 99% of cardiac research funding is focused on adults.
Growing from one family’s labor of love, A Giving Heart Foundation was founded to create new life for children born with CHD. How are we doing this? By funding innovative pediatric heart research and providing the life-transforming support support CHD kids – and their families – need.
Take our work with Ann & Robert H. Lurie Children’s Hospital. AGHF helped launch the NICU-Cardiac Neurodevelopment Program, one of only a handful in the country that provides crucial psychological resources to assist doctors, nurses and social workers in helping CHD children through the psychological trauma as well as the developmental disorders they face. Many children with complex heart conditions experience delayed motor skills, speech challenges, attention/behavioral problems or difficulties in school such as problems with reading, writing, and math.
There is also important work underway to prevent these neurodevelopmental complications. 20-year pediatric heart expert, Dr. Bradley S. Marino, is embarking on a new frontier with research support from A Giving Heart Foundation. In this pilot project, researchers measure brain blood flow in CHD patients during surgery and in the intensive care unit as well as neurologic functioning during the first year of life. This data will provide the basis for an interventional trial that will test the effectiveness of personalized brain perfusion during surgery to achieve the best protection of a child’s growing brain.
This ground-breaking research would not be possible without support. Help us imagine a world where CHD kids get to experience all of the growing, learning, playing, messy joys of childhood.