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Posted by Gabi
on 2/20/2009, 9:25 am
41.177.62.74
Hi there,
I have a 7 week old baby girl who was born 6 weeks prem.
At the hospital I was at they tried to feed her but milk came out through her nose. She was later diagnosed by a prof as having Pierre Robin Syndrome, as he saw a hole in her palate and her jaw and tongue is very far back (but her jaw has come forward slightly). She was diagnosed at 2 weeks old. But, last week I bumped into a distant family member whose daughter has been diagnosed with Trimony 22 with the translocation of the unbalanced 11 and my daughter has similar characteristics to this family members daughter.... ie: ear tags, lower placed ears, nipples far apart, far back jaw, and high arch palate.
I'm now very worried, would the hospital have picked it up sooner? Or could they have missed it. And the prof that diagnosed my daughter also diagnosed this family members daughter 8 years ago, is it possible that he could have misdiagnosed my daughter?
Does the severity of each case differ? And my daughter has a minute tongue, could that be one of the characteristics?
I'm very nervous and worried, but trying to be strong for my family's sake. I am only 22 and this is my first child.... everything is already so new and scary... and now this has to come along too... If anyone can help I'd be very very greatful!
Many thanks
Gabi
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