Dear Jessica,

I have had one experience with a mom whose infant was born with a cleft
palate. He was found to have Pierre Robin Syndrome at birth, delivered
full term via emergency c/s (find out more info about PRS here:
http://www.cafamily.org.uk/Direct/p24.html). In this particular case the
infants jaw was so small that his tongue lay in his throat, lodged in his
airway. He was unable to breath without being intubated. He had a surgery
performed that "buttoned" his tongue to his lower lip to help it grow and
guide the tongue forward as it grew. This techniqe was sucessful!

Anyway, mom was unable to nurse him directly from the breast with
intensive assistance from a LC at Children's Hospital in Philadelphia. He
was unable to form a suction as his cleft palate was pretty severe. Mom
pumped with a Avent Isis hand pump once they were all home (she used the
hospital grade pump during the month baby was in the NICU).  Baby was fed
using the Haberman feeder once his feeding tubes were removed after 1.5
months having it since birth.  Yes, milk definitely traveled up through
the cleft in to the nasal area. He had surgery to repaire the cleft at 15
months old, but continues to sound stuffy as he did as an infant before
the surgery, yet apparantly, there are no leaks in the repaired palate.

Take care,

Megan Allen
breastfeeding counselor for www.nursingmoms.org

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