DO'S AND DON'TS

Tips and Suggestions for Newborn Babies with EB

DO'S AND DON'TS in the hospital for a baby born with

EPIDERMOLYSIS BULLOSA

1. POP and DRAIN all blisters immediately with a sterile needle.

2. NO TAPE OR ADHESIVES ON SKIN EVER!!!

3. Heart leads can be held on with Surgilast stockinet or a special kind that

won't stick or Coban bandage over gauze.

4. Suctioning can tear the throat or nose. May use Foley catheter or premie suctioner instead.

5. Blood Pressure... area has to be wrapped first... DO NOT place cuff directly onto the skin. NO TOURNIQUETS... apply pressure with hand covered with a blanket.

6. Never pick up the baby under the arms. Carefully slide

one hand under the baby's bottom and the other hand under

their head and lift carefully. Use sheepskin or a padded blanket

for infants to protect the skin.

7. NO RECTAL TEMPS! Nothing inside the rectum... it will tear it.

8. If any IV's are needed, the area has to be wrapped with a small area of skin exposed for the needle. Tape can be placed on the bandage only... NOT the skin.

9. CANNOT bag for urine sample. Heat from the urine will cause blistering .

10. DIAPERS... use only cloth or cloth like with Velcro fasteners.

NO tape or plastic at all. Use a larger size and fit loosely on hips and waist.

11. Feeding... Cross cut nipple to make sucking easier.

Put Vaseline on the nipple and baby's lips. Also can use Haberman feeder.

12. NO MORPHINE for pain. Use milder pain reliever first.

13. Make sure padding is under the baby at all times.

Sheepskin or blankets or foam egg crate padding.