9th May 2013 .
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CHARGE syndrome (formerly known as CHARGE association), is a syndrome caused by a genetic disorder. It was first described in 1979.In 1981, the term "CHARGE" came into use as an acronym for the set of unusual congenital features seen in a number of newborn children.
The letters stand for: coloboma of the eye, heart defects, atresia of the nasal choanae, retardation of growth and/or development, genital and/or urinary abnormalities, and ear abnormalities and deafness.
CHARGE syndrome is the leading cause of congenital deafblindness.
Therapy and outcome
Children with CHARGE syndrome can have many life-threatening issues; with advances in medical care these children can survive and become healthy and happy individuals.
Appropriate therapies and educational intervention for individuals with CHARGE syndrome must take into consideration hearing impairment, vision problems, and any other medical conditions that are present.
Early intervention, such as occupational and physical therapy, is very important as the intelligence of children with multiple health issues such as combined deaf-blindness is often underestimated. Because of the developmental delay, early intervention can play an important role in promoting mobility, improving static postures, transitioning towards ambulation, and teaching self care skills.
Parents of children with CHARGE syndrome should be encouraged to be "in charge" and very active advocates for their children in order to ensure development of an educational program that will allow each child to reach their full potential. Children with CHARGE syndrome will vary greatly in their abilities in the classroom: some may need very little support, while some may require full-time support and individualized programs.
In an educational setting, all involved must be aware of the various systems in the body that can be affected with CHARGE syndrome. Taking each of these into account is vital to the success of the child in the educational setting.
A professional packet for educators and other professionals working with children who have CHARGE syndrome is available for download at CHARGE Syndrome Professional Packet. This packet covers a wide variety of issues educators and therapists in various settings may face if they are working with a student who has CHARGE syndrome.
Parents, teachers and caregivers should understand that all behaviors, whether good or bad, are a form of communication. An important step in dealing with the behavior is understanding why it is occurring in the first place and helping the child learn more appropriate methods of communicating.
Transitioning into adulthood
Parents should make sure that before their child reaches age 18 (or the age of majority in their country), they have established which doctors and specialists will follow the individual with CHARGE syndrome in adulthood. Even if the young adult with CHARGE is independent, it’s important to help them maintain their independence by helping them move from the pediatric doctors to the new doctors who will follow them as adults.