This syndrome is ultimately fatal, usually by 2 years of age, though there
are milder variations.  The baby's muscles will weaken more and more and
there will come a point when he will not be able to latch on and nurse.
Eventually, he will be fed by ng tube or gastrostomy.

Those of you who have heard me speak may have heard me read a letter from a
mother whose baby was dying from something like this (but not Werdnig
Hoffman).  Everyone was telling her to stop breastfeeding.  Everyone was
telling her, once he was feeding by tube that the baby did not need her
milk.  Maybe he didn't once he got the tube (though these babies ultimately
die of pneumonia, because they can't move secretions properly, so maybe her
milk did help), but as long as he could breastfeed, why would people tell
her to stop breastfeeding?  Does a dying baby need breastfeeding less?  He
actually continued to breastfeed, I think, for almost 8 months until he
became to weak.  And the mother felt she was doing something for him by
expressing her milk.  Is that so wrong too?  She really felt she had done
her baby good even though he could no longer breastfeed, by giving him her
breastmilk.

Jack Newman, MD, FRCPC

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