Phyllis,
Unfortunately, even in its rarity, I see situations like this far too
often in my position.  I apologize but I think that I missed the
original post so I don't now what the official diagnosis was.  Has there
been genetic testing yet?  There are several "levels" of
bloodwork/studies that can be done for genetics.  There are also tissue
samples/biopsies that take a LONG time to come back.  Unless the inborn
error of metabolism is something detected in the newborn screenings done
routinely in the US like galactosemia or PKU, it can take awhile to
diagnose.So far, I have not been comfortable recommending a nipple
shield with supplementer for a baby that is unable to break down basic
nutrients which would unfortunately include those in breast milk.
Effects of being exposed to a nutrient that cannot be metabolized can
cause irreversible brain/neurological damage, organ damage and failure,
metabolic crises, coma or death.  I am just not comfortable exposing an
infant to even small amounts of a food that will alter their quality of
life.  Right now it may only show as abnormal blood work or urinalysis
but the effects will be devastating.I agree though, that someone could
come up with maybe a nipple shield that does not have any holes as a
barrier to mom and not allow ANY milk to get through, then the
supplement tube and nipple shield.  That idea would be wonderful.
Engineers: why not make it a layered system that can be cleaned and used
long term.  Because 'inborn errors of metabolism' are so critical long
term, there is no room for negotiation.  I would certainly focus on the
mom and her grieving process both for her perception of having a child
with special needs and the loss of the breastfeeding relationship.

Angie Kirkwood RN, BSN, IBCLC

Nurse Feeding Specialist and Certified Lactation Consultant
Children's Hospital of Pittsburgh

Office  412-692-5036



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