My six month old daughter Shelby has PRS and her craniofacial
surgeon is opting to wait until 15 mos to repair her cleft
palate. She is completely NG tube fed and is scheduled for a G
Tube this month. He is still planning on a trach at 15 mos for
the surgery in case of respitory distress. She is able to lay and
play on her back without choking but feeding is still very
difficult due to her choking and breathing difficulties when
eating. According to her swallow exam she does not aspirate when
she does swallow. I had no idea that early repairs were done on
PRS babies with cleft palates. Any suggestions for pursuing
earlier surgery? We are from Northern California and I am worried
about all of the negative affects of surgery so late. Her ped
does not want her on any oral feedings until her surgery - he
states that it would only confuse her when having to re learn how
to process things in her mouth and swallow. My instincts tell me
not to wait until 15mos to give her anything orally. Any
suggestions from parents out there?