Jaye, This baby may have a genetic syndrome. It sure sounds like alot of
physical anomalies. Not sure why the baby had a conehead, was he in the
birth canal a while? Does he still have that shape at 20 days old, that
would be very unusual. I would definitely get him referred, as you are
doing, I am most comfortable with a skilled pediatrician for something like
this, and probably a peds SLP too.
My advice is to feed him by whatever method gets him gaining, and protecting
his airway. I would not, at this time, be trying very hard to get him to
latch, but he certainly can have practice and comfort time. Of course mom
needs to protect her supply, I think this baby will be at greater risk for
illness. I would also keep very close tabs on them, frequent weight checks,
etc. And making sure mom finds someone to take these concerns very
seriously.
Laurie Wheeler, RN, MN, IBCLC
MISSISSIPPI USA

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