I don't have any first-hand experience with this, but I did have amother
attend my  BF calss last Sat whose first baby had Pierre Robin.  She pumped
and fed with a special feeder for 6 months.  She said they put tubes in the
ears "just in case" to prevent ear infections, but her baby did not get any
(which she attributed to her milk).  She told me that her son weighed 10 lb
at 1 year of age.  She said he did not have any tonsils or adenoids and had
the cleft palate.  He is not blind and is not retarded (she also credited her
milk).  He is now 9 and weighs 90 lb!  She is now expecting soon and, since
this current baby had a different father, she is hoping this baby will NOT be
a Pierre Robin baby.  I don't know anything about the inheritability of the
syndrome.  If you want to contact my by private e-mail, I can contact the
mother to see if she would be willing to talk with your mother.  Personally,
I think this is a terrific story of hope!

Martha Brower RD LD IBCLC ([log in to unmask])