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I have a 8 year old son with CHARGE Syndrome. In my wanderings through the medical problems, finding answers and just wondering why, I found that there isn't much infomation out there for parents of children with CHARGE. So, in doing this page I have put together some of the information that I have gathered. Hopefully I have put together some things that I have found helpful. The information here is not just for parents of children with CHARGE, but can be used by anyone that has anything to do with a child with disabilities. Following is a short description of CHARGE Syndrome and a description of my son's problems. There is also a list of some of the places that I have found to be informational and helpful. |
| CHARGE Syndrome |
| CHARGE Syndrome refers to children with a specific set of birth defects. 'CHARGE' originally came from the first letter of some of the most common features seen in children with this syndrome. |
| C = for coloboma and cranial nerves |
| H = heart defects |
| A = atresia of the choanae |
| R = retardation of growth and development |
| G = genital and urinary abnormalities |
| E = ear abnormalities and/or hearing loss |
| CHARGE is usually sporadic, and very seldom are other members of the family affected. Recurrence rate is low, 1 - 2%. The risk of an affected person having an affected child may be much higher. |
| Other overlapping features include VATER association, velocardiofacial (VCF) syndrome, and prenatal retinoic acid (Accutane) exposure. |
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