This is a very rare disease, but there is a parent support group for it
somewhere out there. My first step would be to try to find this group, I
think it is called DEBRA for the name of the disease. Other parents would be
able to help these parents. As far as breastfeeding, I would try to get the
baby back on the breast, and to suggest that the mom pump first to stimulate
a let down so that the baby doesn't have to pull or suck any harder than
necessarey. More likely than not, breastfeeding will be easier and overall
better. ANY friction on the skin causes blistering and skin breakdown, and if
this baby will be allowed to grow up experiencing any of the "normal" baby
things that babies do, including wearing diapers, clothes or shoes and
crawling, walking or playing with toys, the parents may  expect some
blistering and sores, so my vote is with breastmilk on the breast. The
immunological qualities may be invaluable to this baby, as the esophagus and
perhaps even the gut may be affected. I wonder if breastmilk applied
cutaneously may help this baby to heal these wounds better....

Debbie Rabin, OTR, CLC