Initial Experience of Pediatric Urology Consortium in Taking Care of Children with Bladder Exstrophy: the Search for the Holy Grail

Abstract

The bladder exstrophy-epispadias complex is a very rare and complex spectrum of congenital anomalies. The holy grail of treatment for BEEC is volitional voiding with preservation of the upper tracts and patient satisfaction. The development of a collaboration can increase the exposure and experience for a panel of surgeons to better improve the care of babies with this anomaly, both in the surgical correction and in the pre- and post-operative care. The reported outcomes after exstrophy repair vary widely due to different approaches to closure as well as the variable outcome measures used to report experiences. While it is yet too soon to report on final continence outcomes, over the last 6 years, a collaboration between three institutions has increased by three-fold the experience for every individual under the guidance of an experienced coach. The treatment of patients with bladder exstrophy and epispadias is a complex anatomic and physiologic process that requires careful attention to a precise surgery while also focusing on the long-term growth of the bladder and keeping the upper tracts safe. This collaboration, which is predicated on a dedicated team with a focused target, has increased experience and exposure to exstrophy for all institutions.