MATERNAL & CHILD COMMUNITY
soft cleft palate..pierre robin

soft cleft palate..pierre robin

has anyone had any experience with a baby born with pierre robin sequence or syndrome or a baby with a soft cleft palate?  I have looked up things on the internet but its all basically case by case studies..just some reassurance from someone who's gone thru it would be comforting..the dr's have no answers on how long or what to do..its just a day by day thing..which is the hardest
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Try here:

http://www.pierrerobin.org/

The have email support, message boards, other things.  

Keep us posted.  I wish your family the best.
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