Bladder Exstrophy Research and the Multi-Institutional Bladder Exstrophy Consortium (MIBEC)
In 2010, Children’s Hospital of Philadelphia played an integral role in establishing the Multi-Institutional Bladder Exstrophy Consortium (MIBEC), a collaboration between three world-renowned institutions — Children’s Hospital of Philadelphia, Boston Children’s Hospital and Children’s Hospital of Wisconsin — dedicated to improving care and functional and cosmetic outcomes of children with all forms of bladder exstrophy.
The goal of this multicenter team is to provide expert surgical care of babies born with bladder exstrophy and epispadias. For each surgery performed at one of the member hospitals, pediatric urologists from MIBEC’s three-hospital team travel to collaborate on surgical techniques to optimize patient outcomes.
Watch the video to learn more about surgical repair of bladder exstrophy and hear more from the three institutions uniting to advance bladder exstrophy care.
A team approach to bladder exstrophy care
Because bladder exstrophy is rare, occurring in only 1 per 50,000 births, each of these institutions treats only a few children with the condition each year, making it difficult to develop expertise in the bladder reconstruction surgery. By having each team member present for each surgery performed, MIBEC significantly increases the clinical experience each hospital would have on its own, enabling team members to become more experienced in the procedure, refine the operation and give patients the best outcomes.
MIBEC's involvement often begins before birth, with prenatal diagnosis and counseling of families and planned treatment after birth. The goal of surgical reconstruction is to provide children with excellent functional and cosmetic outcomes. While many hospitals treat bladder exstrophy using a three-stage surgical approach, the MIBEC team uses a newer approach called the complete primary repair of exstrophy, repairing the defect completely in 1 stage, which minimizes the number of surgical procedures required to achieve urinary continence.
On the day of surgery, painstaking details of your child's operation are recorded. Each surgery is recorded to guide long-term care and identify which surgical techniques lead to better outcomes.
After bladder exstrophy surgery, our team follows patients long term, ensuring their kidneys are healthy and the bladder is emptying completely, evaluating them for urinary tract infections and vesicoureteral reflux, making sure they are growing and meeting milestones, helping them become socially continent, and offering catheterization and physical therapy as well as social work and psychosocial support when needed.
The MIBEC program evaluates both short and long-term outcomes of bladder exstrophy patients, including quality of life, continence and body image. We believe this research will help us to better understand the important factors that result in urinary continence.
MIBEC's long-term goal is to standardize the surgical approach across each institution, to rigorously study and report outcomes as a national team, and to ultimately make improvements to care based on these findings.