Imagine me - IBCLC (NOT an RN)only 2 years, LLL for 12 years, new city, get
a call from the largest pediatric hospital in town - we have a baby flying
in from another state with EB - 

1. What is it? was my question - and I got a large fax with all the
details.

2. Can she breastfeed?  Well, in our case, the baby was literally falling
apart - there are many grades of this disease, and this baby had the worst.
 He would not survive.

However, bottles or other methods of feeding are very destructive to the
baby's oral tissue - so we decided to try breastfeeding.  (You had better
believe I did NOT do a suck check!)  I assisted mom in latching her baby on
with the least amount of strain on baby's body or mouth - we formed the
nipple and breast by using the thumb and forefinger to have more breast and
nipple to go deeply in baby's mouth so he wouldn't have to suck hard.  We
used foam padding and later lamb's wool behind the baby's head and neck so
mom was not holding his skin (for this disease skin to skin may be more
damaging).  

Baby lived and breastfed longer than they all imagined he would - both the
IBCLC (me) and the mom felt they had done everything they could to have
made this baby's life on earth, short as it was, the least painful and most
loving we could make it.  I always made it a point to show the mom the
baby's eyes and legs, which were not deformed.  He looked with such loving
eyes to his mom!  He knew her well, her sound, her touch, her taste.  

However, I saw at this center other children with much less damaging cases
of EB, and they were doing well.  Good luck and God bless.  

Jeanette Panchula, (too many messages this week - sorry) BSW, RN, IBCLC
Vacaville, CA

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