Transitioning to adulthood in congenital diaphragmatic hernia, how do we design the right services?

For children who have undergone surgical and neonatal intensive care treatment for congenital diaphragmatic hernia (CDH), health care providers' concerns have shifted from survival rates to the management of associated morbidities. In recent decades, an increasing number of children born with CDH have reached adulthood. Although long-term outcome data remain limited, available evidence suggests that lifelong, multidisciplinary care is necessary across multiple healthcare domains. Moreover, the natural course of many associated morbidities remains poorly understood. This review explores the outcomes of CDH survivors during childhood and young adulthood - periods in which complications often become more evident - and underscores the importance of lifelong care. It also addresses the challenges associated with transitional care programs for adolescents living with chronic health conditions. Finally, the review offers recommendations for designing effective services that support children born with CDH throughout their lifespan.