Multi-Institutional Bladder Exstrophy Consortium: 7 Years of Innovation

Over the past seven years, the institutions that make up the Multi-Institutional Bladder Exstrophy Consortium (MIBEC) — Children’s Hospital of Philadelphia, Boston Children’s Hospital and Children’s Hospital of Wisconsin — have performed more than 67 closures in complete bladder exstrophy and 18 cloacal exstrophy closures, and have operated on an additional 33 patients with epispadias. This unique level of experience has allowed us to assess what works well in patients that have particularly successful results, improve our approach and develop a consistent approach to each operation.

We have made the following advances in care:

• Evolved the male genital reconstruction to minimize injuries, which previously had been reported with this procedure
• Standardized each movement made during the surgical procedure
• Improved the safety of the procedure
• Reduced length of inpatient hospital stay
• Standardized postoperative care
• Incorporated intensive physical therapy pre- and post-reconstruction and well into adolescence to enhance and teach children to use their urinary sphincter
• Utilized 3D modeling, which has enhanced our understanding of the best approach to the osteotomy, a critical maneuver that helps enhance urinary continence
• Streamlined perioperative pain management

We are closely examining the impact on vesicoureteral reflux and bilateral ureteral reimplantation at the time of surgery. Our early results show that the vast majority of children that have completed reconstruction are doing well with good bladder growth and steady improvement in urinary continence.

Beginning in year five, we began bringing our graduates back for reunion days where families can interact. These two-day events have been a combination of fun and educational experiences that have helped inform physicians and families alike on the areas of focus going forward. The reunions also reassure children and parents that they are not alone in their efforts to hold their urine, void spontaneously, and protect the health of the kidneys, ureters and bladder, abilities most of us take for granted.

Every six months we hold a multidisciplinary conference in which successful closures are carefully examined and critiqued. A tremendous amount of learning occurs as we review those patients and compare them with patients who are not as far along in their journey. The power of having eight exstrophy surgeons with a combined 250 years of experience following more than 500 patients cannot be overstated. It leads to vigorous discussion and has helped drive the innovations that our three institutional teams have been proud to make over the past seven years.