my daughter was born with Pierre-Robin Syndrome

April - posted on 11/02/2010 ( 4 moms have responded )

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Hi I'm April my daughter was born with Pierre-Robin Syndrome.I'm looking for other moms that have children that has had that. My daughter was 20 days old when she had her surgery to fix her chin and was 9 months old when she had surgery to fix her cleft palate.
Thanks: April

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Feeroza - posted on 03/18/2014

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Hi April I know I'm 4 years too late to add to your blog, my daughter was born in 2010 with Pierre robin syndrome and had her cleft palette repaired when she was also 9 months old I have always been wondering if there was other parents of children born with Pierre robin syndrome.
My daughter was also born with global development delay and is undergoing extensive speech therapy hooding for all the best but it's wonderful what modern medical science and offer

Sarah - posted on 02/12/2011

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hiya my name is sarah both my children had pierre robin my son whos nearly 5 had it worse wiv breathin probs and my daughter who 1 didnt have it as bad.. both also had cleft palates but this runs in our family as quite a few of us have had clefts. where bouts r u from i live in stoke-on-trent.xx

Teresa@MiCleft - posted on 11/15/2010

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Hi April!
I'm new to this group, my name is Teresa. My youngest son was not born with PRS, however, I have many friends with children that do. I haven't browsed through any profiles to see if they're a part of this community, but if you like, I can put you in touch with them. They are all members of the cleft/craniofacial community and I know that they'd be eager to help you and answer your questions!
Teresa

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