I think this is spinal muscular atrophy, a very serious degenerative
disease. I would not focus at all on the palate. I would take the lead
from mother or parents as to what their goals and plans are for this
infant. If mother wishes to directly breastfeed, for example, and
there is a safe way to do some of that (with the tracheostomy), then I
would help her in any way to be able to do that (to whatever extent).
If the goal is to provide mother's milk and comfort care at home, then
I would try to make this as easy for mother as possible. Perhaps a
grant for use of a very good pump would be one way to help her.
Basically take mother's lead, help her or find help, support her.
Best wishes to this family,
Laurie Wheeler RN MN IBCLC
Mississippi USA

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