My very first case in St. Louis (in the 80s) was helping a mother who was
flown in to the Children's Hospital there, as it is a center of care for EB
children in the midwest.

Her baby was VERY sick and expected to die - my job was to make
breastfeeding as easy as possible for the baby so that the tissue in the
mouth would desintegrate as little as possible.  It was a sad and terrible
experience - but a rewarding one also, as the staff had never seen an EB
baby be breastfed - and realized the oral tissue was less irritated by the
mom's breast than by bottles.

There are many different severities of this disease, and I assume your case
is much less severe as she is LIVING, not dying, of it.  I would recommend
very close monitoring of breastfeeding from day one to try to prevent tissue
damage and blistering, with follow-ups to be closely scheduled until you are
sure the mom is breastfeeding optimally.  IF a breast pump is needed, care
must also be taken.  The pressure/friction on a breast pump may be very
damaging unless the size of the shell is very carefully chosen, wet prior to
use, and used very gently.  Hand expression may or may not be the better
alternative, depending on her tissue.

Hope this helps.  There's lots of information on EB on the internet now,
when I did this, they had to fax me pages from a textbook and a professional
journal - times are SO much better now to learn about unusual illnesses.
You can start at:
http://www.niams.nih.gov/hi/topics/epidermolysis_bullosa/epidermolysis_bullo
sa.htm

Jeanette Panchula, BSW, RN, PHN, IBCLC
Vacaville, California




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