Carolyn,
I helped a baby with EB about 3 years ago. I was called into the ped ICU
to find a solution for the problem of oral blisters.  Just as I got
there the geneticist arrived and grabbed a bottle and stuffed it into
the baby's mouth as all the staff looked on in horror.  The poor mom was
a new immigrant from Romania, who spoke no Hebrew, and didn't understand
what was happening, but she had no intention of bottle-feeding the
baby.  I do not speak Romanian but I just hugged her and explained in
sign language that the minute he left, we would fix the problem.  At
that point the baby was not expected to survive.
We did notice that she managed to drink from the bottle, with less
discomfort.....mouth to breast causes more friction that mouth to
silicone.  I taught the mother to use a silicone shield, in addition to
hand expression following feeds . The baby gained weight quite well
considering her situation.  We used the milk from the hand expression on
some of the lesions with amazing results!!

This baby survived. The mom learned Hebrew very quickly and we remained
in touch for a long time.  The breastfeeding was the least of her
problems, but it  certainly helped this baby meet all the health
challenges related to EB.

It is a horrible disease and this mom will need much support along the
way. You have to be careful with positioning the baby....any contact
causes blisterous lesions immediately which then rupture resulting in
open wounds.

Here are some good websites for the mom:
http://www.debra-international.org/
http://www.leftgrlls.com/silvia/ebmommas.htm

Esther Grunis, IBCLC
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