daughter with cleft in soft and failure to thrive

[lmarble@hotmail.com]

My daughter was born with a cleft in her soft palate, she also
has a very small chin that when she is on her back, partially
blocks her airway. She is 3 years old now and only weighs 22
pounds. She gets all of her nutrition solely through a
gastrostomy tube that has been in place since she was 2 weeks
old. When she was born, we tried to feed her with a Haberman
nipple, but her suction was extremely poor and what she did
manage to actually get, went right into her lungs. So the
placement of the g- tube was neccesary. But now she is 3 yrs old
and I am very frustrated, she has many developmental delays and
is extremely smal. She has been going to a Childrens Hospital in
Fresno CA and it seems not much is being done to help fix her
cleft. She has been going to a cleft palate clinic, but it is
only once a year. At the last clinic, the plastic surgeons didn't
even bother to show up and my daughter was not imideately
resceduled, they sent her a notice for an appointment in July of
99. She has regular doctors who see her throughout the year for
regular problems, but one of the folks at the Childrens Hospital
told me that If she had been an oral feeder from birth that they
would have fixed her cleft right away, but being as she could not
eat orally, they aren't going to fix it, they want her to try to
eat even though she chokes violently and whatever goes into her
mount pours out of her nose and sometimes into her lungs. Somehow
their logic about not fixing it because she can't feed orally
sounds a bit backward to me. So if anyone has any insight for me,
I would appreciate hearing from you. I am very frustrated and I
want to be able to help my little girl, I don't want her eating
through a g-tube the rest of her life. lmarble@hotmail.com