CHARGE syndrome is a recognisable genetic pattern of birth defects, which occurs in about one in every 9,000 – 10,000 births worldwide. It’s an extremely complex syndrome, involving extensive medical and physical difficulties that are different from child to child. In most cases, there is no history of CHARGE syndrome or any other similar conditions in the family.
Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home.
Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to need medical and education intervention for many years.
Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
Continued research is needed to help us understand the medical and developmental challenges facing people with CHARGE. Better understanding will lead the way to interventions, therapies and education strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.
One of the hidden features of CHARGE syndrome is their determination and strong character, particularly in children.