>
>Date:    Fri, 13 Jun 1997 22:36:28 -0400
>From:    Janet Hoover Malo <[log in to unmask]>
>Subject: Dystrophic Epidermolysis Bullosa
>MIME-Version: 1.0
>Content-Type: text/plain; charset="us-ascii"
>
>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.
>

Janet -

        Wow - this is a tough case!  I've never heard of Dystrophic
Epidermolysis  Bullosa either.  Because of the nature of the illness, I am
inclined to believe that breastmilk would be imperative for this baby's
survival perhaps into childhood and even adulthood.  Breastmilk would
probably be the most compatible food  to decrease the symptoms in this baby.
Definitely encourage mom to relactate.  Once I remember Chele Marmet talking
about someone (an adult) she knew or knew of who could only consume
breastmilk.  Perhaps a referal to Chele?  Regarding the baby's method of
consumption: it appears that regardless of use of bottle or breast the
baby's oral mucosa is damaged.  It may not be appropriate  to encourage mom
to place baby back on the breast.  Perhaps mom and peds would consider
cupfeeding.  That may be the least traumatic to this baby's tissues.

        Please keep us informed.

        Donna Zitzelberger RN, BSN, IBCLC