His severe muscle weakness is likely responsible for the high palate, 
and it's unlikely that there's anything that could be done. If mom wants 
to nurture him at the breast, she can try supportive positioning 
(positioning that causes gravity to press the baby against her rather 
than pull him away) and perhaps sublingual support- gentle pressure from 
a fingertip under the soft part of the chin, pressing upward into the 
mouth and drawing gently forward toward the center of the mandible 
(lower jaw bone). This supports the tongue muscles and a more correct 
tongue position, and may allow the baby better use of his tongue and 
partially compensate for the higher palate. The g tube is a real gift, 
she can not worry about him transferring milk himself and just enjoy him 
being at her breast if he has the strength to maintain a latch. If not, 
they both might get some enjoyment out of him licking and nuzzling at 
the breast. She could hand express drops of milk for him to taste. Is 
the trach the type that allows swallowing? Not that he's likely to 
generate large boluses.

Poor mommy, having to deal with such a terrible prognosis for her baby.

Catherine Watson Genna BS, IBCLC  NYC  cwgenna.com


On 2/8/2012 4:14 PM, Jojomari818 wrote:
> PTP: 2 month old, getting ready to leave the NICU to be at home with his family - has Type 1 SMA (we all know, not a good prognosis) has a Trach&  G-tube (through which he gets his mom's milk). Due to his poor tone and inability to suck he has quite the high arch to his palate - the question is, should we be concerned about this at all given the dx, and if so, is there a way to help his palate to flatten/round out?
>
> TIA
>
> Jodie Drum RN, BSN, IBCLC
> currently working in Washington DC
>
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