SMILES

MY ELEVEN WEEK OLD DAUGHTER HAS PIERRE ROBIN AND CLEFT PALLET. AT 7 DAYS OLD SHE HAD SURGERY TO ADHERE HER TONGUE TO HER LIP. SHE HAS AN UPCOMING APPT.WITH THE PLASTIC SURGEON TO LOOK AT HER PALLET REPAIR. I AM LOOKING FOR SOME MORE INFO. ON THE TONGUE LIP ADHESION NOW THAT HER SURGERY MAY BE COMING UP SOON.

Since no one has answered yet, I'll try to help out with what I can .


I don't have any personal experience with pierre robin, and wasn't able to find out much about the tongue lip adhesion on the internet but you might be able to join the Pierre Robin Network at <a href="http://www.pierrerobin.org/">http://www.pierrerobin.org/</a> and ask in their message board and mailing list.


Kim, The Cleft Club, <a href="http://cleftclub.cjb.net">http://cleftclub.cjb.net</a>

my daughter leah is 4 years old and had tongue lip adhesion at 2 months and palate repair at 10 months. she has pierre robin sequence. she is doing great now. i would be happy to communicate with you on my experiences.