bullosa baby

prmenrs, RN · Feb 2, 2010

I suggest you do a lit search, paying especial attention to NANN and Academy of Neonatal Nursing. If you are not currently members of these organizations, I think you should sign up, as well as some other members of your staff.

You might also seek articles authored by Caroline Lund. She is an authority on skin care.

Do you actually have a pt w/this problem, or is this a hypothetical question? If your hospital is not familiar w/the care of such an extremely complex pt, I'd like to respectfully suggest you advocate for transferring the patient to a higher level institution.

Mimi2RN, ASN, RN · Feb 12, 2010

Here are a couple of good sites for information.

http://www.debra.org/

http://www.ebkids.org/

I did a little research after we had a second sibling deliver. Both babies were transferred to the Children's Hospital, but they were term babies with EB, nothing else going on. Now I have a better idea how to care for a baby until transfer occurs. Nothing should rub or cause friction. No tape or the skin can shear off. An eggcrate mattress is useful, even when the baby is held, and it is OK to hold a baby with EB. Unfortunately, it doesn't go away, the parents have to learn how to cope and these organizations will be helpful.

EmilyPeruana · Feb 15, 2010

i was a new nurse when i remember seeing an EB baby...the baby wasn't a preemie so we didn't worry about spells...we did our best to keep a pulse ox on her ear lobe...only place that didn't seem to peel or bleed as easily...parents obviously wore yellow isolation gowns (as did we)...we used a light green burn sheet (not sure how your hospital's is) and cut it to make a "dress" to protect her when we held her or positioned her. it seemed to work very decently. using a haberman bottle versus a regular similac nipple because the haberman nipples are much smoother and would be silkier against her tongue and sides/roof of her mouth. it seemed to go really well. i'd be lost if the baby was a preemie and required a picc/piv or ng tube. we tried an ng tube but it just rubbed away too much. good luck. takes a special nurse and special set of parents for an EB baby.