CHARGE Syndrome

Learn about: CHARGE Syndrome from Catherine Lacey Dodd,...
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CHARGE Syndrome

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CHARGE Syndrome is one of the most medical and sensory challenging syndromes that I've known. It's an acronym. C stands for Coloboma of the eye, which means that the eye is never fully closed during the development phase. H is for heart defects, which is actually a pretty universal medical aspect of CHARGE Syndrome. A is for Atresia, which is a narrowing of the nasal passages. So as you can imagine that will cause challenges for the child in terms of breathing and swallowing. R is for Retardation of growth or mental retardation. But that's pretty much a misnomer, especially regarding my child. G is for genital abnormalities. So the children for example, the boys may have undescended testes. And E is for Ear abnormalities. My son has moderate to severe hearing loss. We had the diagnosis after about a week. Basically we started to identify a number of different medical issues and they linked together to form CHARGE Syndrome.

Learn about: CHARGE Syndrome from Catherine Lacey Dodd,...

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Catherine Lacey Dodd

Mom & Photographer

British born and living in Los Angeles, Catherine Lacey Dodd is the mother to Reuben Jack, age five, and Callum Andreas, age four. She’s a work at home mama, owner/photographer at Catherine Lacey Photography and creative writer. Reuben, whose name means, "behold a beloved son", has CHARGE syndrome. He has undergone 18 surgeries including two open heart and countless hospitalizations. Callum is his much longed for brother and his best friend. She created the blog, ReubenJackDodd, which tells her family’s journey through thought-provoking words juxtaposed with eye catching imagery and the sweet faces of her two little loves. 

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Transcription: 
CHARGE Syndrome is one of the most medical and sensory challenging syndromes that I've known. It's an acronym. C stands for Coloboma of the eye, which means that the eye is never fully closed during the development phase. H is for heart defects, which is actually a pretty universal medical aspect of CHARGE Syndrome. A is for Atresia, which is a narrowing of the nasal passages. So as you can imagine that will cause challenges for the child in terms of breathing and swallowing. R is for Retardation of growth or mental retardation. But that's pretty much a misnomer, especially regarding my child. G is for genital abnormalities. So the children for example, the boys may have undescended testes. And E is for Ear abnormalities. My son has moderate to severe hearing loss. We had the diagnosis after about a week. Basically we started to identify a number of different medical issues and they linked together to form CHARGE Syndrome.