does anyone have a child with a partial 17q duplication?

Cassie - posted on 09/08/2012 ( no moms have responded yet )




if so can you please tell me the long term affects. My son is 2 months old. he is still in childrens hospital. he is supposed to be released soon. he has/had vocal chord paralysis, microcephaly, seizures, undecended left test, dislocated left hip, hyp dysplasia in the right hip, clubbed feet, clenched fists, he had to get a tracheostomy, and he has a g tube for feeding. he is currently up to 7 lbs (4 lbs when born at 37 weeks) there is not much information on this disorder because it is so rare and no one can tell us of others who have children with this and how they are thriving as they get older. I have two perfectly healthy children age 5 and 7. My son who is 7 had a curved foot when he was born, but not clubbed and had surgery to correct it. However, we have never dealt with anything this severe like our baby has. My 2 month old is named Zane, my 7 year old is zach and my 5 year old is Zoe.

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