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 mailto:[log in to unmask] *********************************************** The LACTNET mailing list is powered by L-Soft's renowned LISTSERV(R) list management software together with L-Soft's LSMTP(TM) mailer for lightning fast mail delivery. For more information, go to: http://www.lsoft.com/LISTSERV-powered.html