Pediatrics World Conference 2026

Abstract

Introduction: The management of children with the Exstrophy-Epispadias complex (EEC remains challenging. Despite initial successful surgical reconstruction, patients require long-term follow-up and eventual management of continence, to be able to ensure a good quality of life. Intermittent management of children by well-meaning medical missions, leads to fragmentation of care and attempts at providing outcomes using varying surgical philosophies. The strategy of the collaboration, was to provide longitudinal care for children with the EEC, in Uganda and by extension, in Eastern Africa while training local staff to eventually provide long-term care for children and young adults with EEC.
Methods: Starting in 2018, the Association of Bladder Exstrophy Community (ABeC) began outreach to Uganda. The goal of the mission was to provide initial surgical care and comprehensive nursing and psychosocial services for children with EEC, and to and to identify and train local proviers that could manage these children long-term, using strategies that have been successfully implemented in the United States. In 2024 a collaboration was developed with Emergency to provide this care at the newly opened Children’s Surgical Hospital (CSH) in Entebbe, Uganda. Over the past 2 years, this collaboration, has met with considerable success in the treatment of children with EEC.
Results: Since starting the collaboration, 23 patients have had surgical management in conjunction with the US team, and an additional 13 patients have had surgical management performed by the local staff at CSH. Surgical management included initial bladder/abdominal wall closure, epispadias repair, bladder neck repair, vaginoplasty and continence procedures. Consistent use of strategies, including osteotomies and fixation, as well as ongoing long-term follow-up, have led to reduction in failure rates of reconstruction and improved quality of life.