I had already written about my experience with EB, so I didn't reply to the group, but rather to the original requestor - however, I wanted to suggest that the Haberman, in this case, MIGHT make the hospital staff think they could feed the baby with less stress than breastfeeding because you can put it in the baby's mouth and YOU can compress the teat to release milk instead of having the baby suck OR put pressure on it - thereby reducing the irritation to the fragile tissue inside the mouth.

I say they MIGHT think this - because my ONE experience with a baby with EB found that the contact with mom's breast tissue (with a mom whose milk supply was abundant) was NOT as damaging as the specialists expected, and breastfeeding continued until this baby was very compromised...  I believe the Haberman, in that situation, would have not been as good as using mom's own breast.

Jeanette Panchula, BA-SW, RN, PHN, IBCLC
California, USA

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