[Care of newborns and infants with epidermolysis bullosa]

Abstract

When a baby is born, the first bonds of attachment are slowly formed. Primary care, such as feeding, changing, carrying, rocking or putting the child to sleep, is very important for the development of these bonds. In the event of early hospitalization, and especially in the case of a newborn with fragile skin, parents are deprived of this first care, which is a key moment they looked forward to during pregnancy. Feelings of fear and guilt are bound to develop during the establishment of these first bonds. That's why it's essential to support these families as early as possible, and involve them as much as possible in their baby's care.

Keywords: accompagnement; hereditary epidermolysis bullosa; parentalité; parenting; prevention; prévention; soutien; support; épidermolyse bulleuse héréditaire.