I received a call from a family in Plattsburgh, NY.  I have permission to 
post.

Baby is 8 days old.  Multiple issues including possible mosaic Trisomy 18, 
possible CHARGE syndrome, cleft soft palate.  Now taking EBM through 
dropper.  Poor weight gain.  

The family is receiving medical care (genetic counseling, cardiac 
screening, ophthalmology, etc.) in Burlington, VT.  

Mom is very committed to giving baby breastmilk for optimal neuro 
development, etc.  She did nurse her older child.  She is pumping more 
than baby is taking at this point.

The family is looking for any hands-on BF support they can get.  I am 
nearly 5 hours away from them.  Doesn't sound as though they have had 
direct contact with an LC.  Seems like the medical folks they are dealing 
with are pretty supportive of the EBM at this time, though.  The family 
does not have internet/email access.

Please email me privately if you know of anyone closer who would be able 
to offer hands-on BF support/assistance to this family.

Thank you.

Jayne R. Charlamb, MD, IBCLC, LLLL
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