I may have misspelled the name of this syndrome but I am wondering if anyone
is familiar with it.  It involves a malformation of the face and in this
baby also involving the alveolar ridge.  Usually they are born without an
outer ear but this baby is fortunate and does have both ears and bilateral
functioning kidneys.  Hope this gives enough information for you to know
what it is.  Anyway, this particular baby also has very low tone in her
upper extremities.  One doctor thinks it may be part of the syndrome and
another thinks it is due to delivery since they tried a version before they
did a C-section for breech.  She has a very weak, disorganized suck with low
tone throughout her oral cavity.  With a little flow at the breast, she did
"suck" but it was more of a disorganized suck without the compression.  We
are treating her much like a cleft palate baby although her palate is
intact.  She does have a very high arched palate, however.  The doctor wrote
that she has a "dysfunctional" soft palate but it is intact.  I could never
get her to do a good enough suck on my finger to really feel what was going
on with it so I don't know what he meant by that.  Mom is an RN and really
wants to breastfeed this baby so will be very conscientious about pumping, I
know, but I want to be realistic with her as to what she can expect.  Right
now we are putting the baby to breast with a tube and syringe of expressed
milk so we can add some flow intermittantly when the suck is organized
enough.  She is using jaw and chin support as we would for any low tone
baby.  When the baby gets tired or if she can not take a full feed, mom is
using the squeeze bottle.  We may try the Haberman tomorrow but our local
craniofacial clinic prefers the squeeze bottle unless mom really wants to
use the Haberman.
I need to know more about this syndrome as feeding relates to it.  Are we on
the right track or are we treating it too much like a cleft palate when it
really is something different?
Thanks to all of

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