Rehabilitation Intervention for an Infant with Simple Epidermolysis Bullosa from NICU to Home Discharge: A Case...

Background/Objectives: Reports detailing rehabilitative interventions for infants with severe dermatologic disorders are scarce. Epidermolysis Bullosa (EB) is a genetic disorder characterized by skin fragility, which causes blistering after minor trauma. Since there is still no cure in general clinics, symptomatic treatment and developmental support are essential for managing the condition. While physiotherapy and occupational therapy guidelines for EB exist, descriptions of neonatal habilitation/rehabilitation are insufficient. Case: This case report describes the longitudinal habilitation/rehabilitation intervention process for a newborn with Dowling-Meara EB, the most severe form, from admission to the Neonatal Intensive Care Unit (NICU) until discharge. Since maneuvers requiring contact were strictly limited due to skin vulnerability, rehabilitation interventions were implemented utilizing the opportunity afforded by necessary care. Intervention strategies were modified according to developmental stages and skin stability, with a particular emphasis on sensory development, postural control training, and fostering the mother-child relationship. This report is the first to describe the applicability of sensory rehabilitation and the use of behavioral cues to facilitate voluntary movements. In addition, careful respiratory rehabilitation was implemented for comorbid tracheomalacia with specific attention to skin vulnerability. The child achieved stable head/neck control, symmetrical limb movements, reaching, guided rolling, and stable oxygenation by the time of discharge. Conclusions: Balancing skin disorder prevention and motor-neural development requires flexible approaches that minimize contact while utilizing routine care as a training opportunity. Our experience will contribute to the progress in the habilitation, wound rehabilitation and respiratory rehabilitation of infants with severe dermatologic disorders.