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This one is about: Finding Pierre Robin Information
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Finding Pierre Robin Information
My name is Sharon and my daughter Meghann also was/is diagnosed with Pierre Robin sequence. One of the great places for information is here. There are approximately 18-19 families here with children who have Pierre Robin in varying degrees. Meghann had problems with feeding and breathing although the breathing was "fixed" by positioning rather than surgical or artificial intervention. We have parents here who have children who have feeding tubes, trachs, and have had many of the repairs that may or may not happen to Evan.
Another great source is the internet in general...If you have a browser (search engine) I like Alta Vista, but I also use Lycos and the AOL Webcrawler. Enter in the words Pierre Robin Syndrome (for some reason this brings up info better than Pierre Robin Sequence). You can also look under neurosurgery (pediatrics) look under jaw abnormalities I have found info dealing with Pierre Robin issues there also. I have also looked under apnea, and obstructive sleep disorder and just plain obstructive breathing for more information.
Another source of information can be the social worker (if you have one) with the craniofacial anomalies panel...I'm not sure what their panel would be called in Australia. Also perhaps the local Health Department in your area would be able to help direct you to information.
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