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Subject:
From:
Janet Hoover Malo <[log in to unmask]>
Reply To:
Lactation Information and Discussion <[log in to unmask]>
Date:
Fri, 13 Jun 1997 22:36:28 -0400
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Wonderful and helpful Lactnetters,
        I was asked for suggestions about helping a mom relactate. Here is
her situation:

Her baby has a rare disease called Dystrophic Epidermolysis Bullosa which
very roughly means the layers of skin don't stick together.  Any kind
of friction can produce lesions/blisters on the skin.  Feeding can cause
blisters in the mouth and throat.  The baby will most likely have
to be tube fed when she's old enough to start solids as the scaring
caused by eating solids can be pretty dangerous.

Initially she tried to breastfeed the baby, but it was causing her lip
to split.  She stopped and began pumping to give the baby ABM
in a bottle. She quit pumping when her Doc wanted to put her on
antidepressants. Now the baby has been on ABM for the last 3 months.  She's
having a hard
time with the bottle causing the baby's mouth to bleed so is going to
try to get the baby back to the breast.

I have never heard of this disease much less worked with an affected baby.
To make matters worse this is being done through second hand e-mail! I
advised finding a local LC right away. In the mean time I have given the
basic relactating advise and recommended finger feeding as a way to
decrease trauma if the baby  The archives do not have anything specific to
this problem.

Any suggestions for this mom and babe?

Thanks for your help
Janet Hoover Malo, LM
and IBCLC supplicant in July.

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