Hi Cheryl,

I have cared for a little guy that had this disorder...back in my days as a
NICU nurse. I seem to remember that he lived only a few weeks or months.
Are they talking about any kind of bone building surgeries? If not I
suspect they are considering him a hospice case.

The chances of him actually breastfeeding are quite slim to none. But,
providing milk in cases like this can be an important part of the grieving
process. Also, even if he has to lie on his tummy, I'd encourage the mom to
get up next to him and offer skin to skin comfort.

Best wishes as you work with this very difficult case.

Susan

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