Rare genetic disorder, tube fed, cleft palate

Cheryl - posted on 05/01/2012 ( 1 mom has responded )




Hi, I have a beautiful 8 month old daughter. She has a partial 7q trisomy. She has cleft palate, reflux and is developmentally delayed. Since she was 2 months old I have had her in PT. She gets tube fed and recently started ST and OT. It is a comfort to see so many parents who also have children with delays but who are strong and continue to do the best for their children. It can be so discouraging when it seems that everyone around you has perfect typical babies. It makes me feel so isolated. I would love it if I could find someone with a similar diagnosis as my baby.


Tina - posted on 05/02/2012




When i was a kid a spent alot of time in hospital i remember there was a baby in there. No one every came to visit him he was just like your child. I spent most of my time with him I'd always helped the nurses take his temp and was basically like a big sister to him. That was so long ago I don't know where he is now but it's great that parents stick by their children no matter what. Every child is different. Also a friend of mine had some health issues as a baby you wouldn't know it now though she is smart and healthy she was in the navy for a while now she has her own beautiful baby girl. I'm not in the same situation as you but I just hoped that I these stories would be some what encouraging for you.

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