Nursing Intervention for Infants with Epidermolysis Bullosa (Butterfly Disease)

  1. Handle gently.
  2. Do not rub the patient’s skin.
  3. When handling, pat rather than rub the baby.
  4. To lift the baby, Place a blanket under the baby. Lift the baby using the blanket as a shield in between your hands and the baby. Roll the baby onto his side, place one hand beneath the bottom and another beneath the head, allow the baby to rollback onto your hands and lift in one movement.
  5. Avoid lifting babies from axilla.
  6. Request from clerk a sheepskin or egg crate for the babies’ crib. There may be need for an air bed which can be requested from the floor nurse clinical leader.
  7. Avoid the use of name bracelets to decrease friction on the wrist of the baby.
  8. Dress the baby with soft, loose fitting clothing without any seams.
  9. Turn clothing with seams inside out, so that seams are facing outwards.
  10. Suggest to parents to purchase a full sleeper that includes feet.
  11. Dress the baby with soft, loose fitting shoes.
  12. Cut the elastics on socks.
  13. Use soft loose fitting shoes
  14. When feeding, use a Habermann nipple to avoid oral blisters. (Habermann nipples can be purchased by parents in the Sick Kids specialty food store.)
  15. For the breast feeding baby, apply Vaseline on the baby’s face prior to feeding to avoid friction contact with mother’s skin.
  16. IV fluids/antibiotics are only necessary in the presence of sepsis or dehydration.

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