Sometimes, parents and caregivers are adverse to holding an EB baby because they are afraid of damaging the skin and causing blisters. Some parents even choose not to hold the baby during feedings. Babies with EB need the added comfort and security of being held and touched. The benefit of being held far outweighs damage that may result from a blister. Blisters are a part of the child’s life and cannot be avoided.
Parents must determine a comfortable way to hold their child. After the baby is properly bandaged and protected as much as is reasonable, the child should be held and cuddled, the same as any baby. Swaddling the baby will offer added protection. Parents should cut their own fingernails short, remove large rings and jewelry, and wear soft clothing that will not irritate the baby's skin.