I agree. It does sound like Pierre Robin Syndrome/Sequence.
My son was born with the same symptoms. Our geneticist finalized that he was born with Pierre Robin. According to statistics, the condition is very rare 1/1M, but treatable. There are different levels of micrognathia and in some severe cases a jaw extension is necessary. In my son's case we chose not to extend his lower jaw but to provide time and assist him to developmentally overcome. Our story is available at:
http://www.cleft.org/families/theodoros.htm
You can find more about micrognathia and the possibility of Pierre Robin through the Online Mendelian Inheritance in Men (OMIM), available by the National Center for Biotechnology Information (NCBI) and Johns Hopkins University.
http://www.ncbi.nlm.nih.gov/entrez/disp ... ?id=261800
Let me or my wife know if you have any questions about our experiences.
Gregory
(11yoB, PRS)