My daughter, also diagnosed with VACTREL Syndrome had an extreme case of
tongue tie.  She was hospitalized the first 2 weeks of her life
undergoing major surgery for an imperforate anus.  If you were to
visualize her tongue, the mobility of it was quite diminshed.  While
nursing was impeded by a number of things the first 2 weeks, following a
simple clip, she began to nurse like a champ.  I don't know if that was
totally due to the surgery, but the taughtness of her tongue I would
have thought would at least cause her the need to adapt from normal
tongue strokes.  Sinse it was done at 3 weeks and a long time ago I am a
little foggy on the comparison of before and after.  I think she just
adapted to a different type of suck, and I don't know what the long term
ramifications would have been.  I was also concerned about her speech
since she had what I would consider a moderate to severe case of tongue
tie.  But it does exist and I can't help but think what problems may
have occurred if left unattended.

Mom/RN CBE and Lactations Educator Debby Aiton Eishenower Med Center,
Rancho Mirage, CA clocking in at a mere 123 degrees.  But the milk is
still good here!