Bladder Exstrophy: A Multi-Institution Approach

Bladder exstrophy is a rare birth defect in which the baby is born with the bladder outside the body. www.chop.edu/MIBEC
0:08 Bladder exstrophy patient story
0:33 Bladder exstrophy diagnosis in the womb
1:22 A multi-hospital approach to bladder exstrophy surgery
3:56 What is bladder exstrophy?
5:19 Single-stage surgical repair for bladder exstrophy
6:13 Benefits of single-stage surgical repair for bladder exstrophy
0:08 Bladder exstrophy patient story
0:33 Bladder exstrophy diagnosis in the womb
1:22 A multi-hospital approach to bladder exstrophy surgery
3:56 What is bladder exstrophy?
5:19 Single-stage surgical repair for bladder exstrophy
6:13 Benefits of single-stage surgical repair for bladder exstrophy
Three top pediatric hospitals have united to help children with this condition. The Multi-Institutional Bladder Exstrophy Consortium (MIBEC) includes pediatric urologists committed to improving bladder exstrophy care.
Bladder exstrophy involves the urinary, reproductive and intestinal tracts as well as pelvic bones and muscles.
Formed in 2010, the Multi-Institutional Bladder Exstrophy Consortium is a collaboration between Children’s Hospital of Philadelphia, Boston Children’s Hospital and Children’s Hospital of Wisconsin dedicated to improving care and outcomes of children with bladder exstrophy.
Babies with bladder exstrophy are born with the bladder outside the body. While a baby is in the womb, the abdominal wall doesn’t fully form, leaving the pubic bones separated and the bladder exposed outside the body. Because the bladder and urethra are not closed, the bladder cannot store urine. Urine produced by the kidneys drains into this open area. Children with exstrophy of the bladder also have epispadias, a condition in which the urethra isn’t formed completely.
Complications of these conditions can include urinary incontinence, vesicoureteral reflux and infertility. Bladder exstrophy treatment measures include reconstructive surgery and catheterization.
MIBEC unites pediatric urologists from three world-renowned institutions who have specific interest and expertise in bladder exstrophy and epispadias. Team members from each hospital travel to partner hospitals to observe and provide guidance on each bladder exstrophy surgery performed.
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 quadruples 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. Families can choose to receive care at whichever of the three participating hospitals is most convenient for them and will still benefit from the input and expertise of the full MIBEC team, as well as orthopaedic surgeons, pediatric anesthesiologists and specialized nurses from each institution who have special expertise in bladder exstrophy repair.
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.
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.
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 in an effort to better understand the factors that result in urinary continence. Each surgery is recorded to guide long-term care and identify which surgical techniques lead to better outcomes. We also evaluate patients’ short- and long-term outcomes, including quality of life, continence and body image.

[@siwiwijiati]

I have a baby with a complaint of bladder extrophy, 8 days old my new baby in surgery and now my baby is three months old. the second surgery plan at the age of six months. I do not speak English, so I do not understand the conversation in this video.

[@extrofiavesicalbrasil6369]

Beautiful work! Legend in Portuguese, Please.