My client's baby was severly brain damaged at birth.  She wasn't expected
to live, was on support systems for breathing, clearing lungs, and
nutrition.  At one time the family was ready to make a decision about
ceasing the supports and say goodby to her.  On that day, baby showed some
"improvement" so the HCPs advised against stopping the supports.  She was
sent home to die on her own--with all of the machines. She is still living,
of course, taking every minute of this family's time and energy. She
requires 24 hour observation of parents or home health nurses.

Baby has had only breastmilk in her feeding tubes for these 6 months.  She
still is on all of the supports. She is showing some "improvement" now and
is not expected to die.

Up until now, everyone left the mother alone concerning nutrition, but all
at once, the gastroentologist and Ped are concerned that breastmilk is not
adequate nutrition for her and she needs to receive fortifiers for proper
nutrition. Mom says that so long as they thought she would die, her milk
was ok, but now they want to get in on her nutrition.  She is mad.

But she also wants to nourish her baby the best she can.  She b'fed her
older child and started solids when he was ready to be at the table,
focusing on iron-rich foods.  She called to ask about this little one and
her iron stores and possible need for additional nutrients.  Obviously, the
usual readiness for solids will not be evident and the MDs are doubting the
adequacy of breastmilk.

She has GI disturbances which have been eased by mother's diet adjustments
and Mother is reluctant to introduce something foreign.

I had a couple of suggestions.  One was to take baby's saliva a few times a
day and put it on mom's nipples to "program" the nutrients more closely to
what baby needs daily.  The other was to have a blood test to check the
hemoglobin before considering supplementing.  Baby was term and should have
adequate iron stores for an extended time, especially since she has had
only breastmilk for her 6 months.

I don't know that any of you have dealt with such a tragic case, but do you
have any ideas for this mom about the extent of nutritional sufficiency of
breastmilk?  On Lactnet we have tossed around the subject of delayed
solids, and I have my own daughter's story of her high heme count at 11
months, but what do you think is in the nutritional future of this little
girl?

Any thoughts will be most appreciated by this heroic mom.

Pat Gima, IBCLC
Milwaukee Wisconsin

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