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PubMed This is a summary of 17 peer-reviewed journal articles Updated
Pediatric Urology

Building Your Care Team and Finding a Center of Excellence

At a Glance

Classic bladder exstrophy is a rare condition requiring highly specialized surgical care. The most critical step for your child's success is finding a high-volume Center of Excellence with a multidisciplinary team that performs at least 5 to 10 primary closures annually.

Classic Bladder Exstrophy (CBE) is so rare that most local pediatric urologists may only see one or two cases in their entire career. Because the first surgery (the “primary closure”) is the most critical factor in your child’s long-term success, finding an experienced, high-volume surgical team is your most important first step [1][2].

Research shows that children treated at specialized centers by dedicated pediatric urologists have significantly higher success rates for primary closure compared to those treated by general pediatric surgeons [2][1]. If the first closure fails and “pulls apart,” subsequent repairs are more difficult and have a lower chance of achieving future urinary control [1][3].

The Multidisciplinary Care Team

CBE is a complex, multisystem condition that requires more than just a single surgeon. A high-volume Center of Excellence will provide a coordinated team of specialists [4][5]. Your team should include:

  • Pediatric Urologist: The lead specialist who reconstructs the bladder and genitalia. Experience in exstrophy is vital, as these surgeons utilize more specialized techniques and adjunctive procedures to ensure a successful closure [1][2].
  • Pediatric Orthopedic Surgeon: An expert who assesses the pelvic bones and performs the osteotomy (reshaping the pelvic bones) to allow the abdominal wall to be closed securely [6][7].
  • Pediatric Anesthesiologist: A specialist trained to manage the unique needs of infants during long, complex reconstructive surgeries [8].
  • Psychosocial Support: Psychologists or social workers who specialize in helping families manage the emotional and social aspects of a rare congenital condition [9][10].
  • Specialized Nursing: Nurses and wound care specialists who understand how to manage your child’s recovery and immobilization after surgery [11].

Finding a High-Volume Center

Medical experts strongly recommend centralizing exstrophy care to a few dedicated units [3][2]. High-volume centers often achieve primary closure success rates as high as 87% [12].

When evaluating a center, look for institutions that:

  1. Perform at least 5–10 primary closures annually. This level of volume ensures the entire hospital—from the surgeons to the nurses in the recovery room—is familiar with the unique needs of exstrophy patients.
  2. Participate in Research Registry. Dedicated centers often contribute to national or international exstrophy research consortiums, staying at the forefront of the best medical evidence [13].
  3. Offer Lifelong Care. The best centers have a “transition” program that supports your child from infancy through adolescence and into adulthood [14][15].

Don’t be afraid to seek a second opinion or to travel for care. A small delay in the first surgery is perfectly safe and is far less risky than having the surgery performed by a team with limited experience [16][17]. Your goal is to give your child the best possible foundation in their very first operation.

Return to Validation & Orientation Overview

Common questions in this guide

Why is it important to choose a high-volume center for classic bladder exstrophy?
High-volume centers have dedicated multidisciplinary teams that treat many cases each year. Research shows that specialized centers achieve significantly higher success rates for the critical first surgery, known as primary closure.
Who should be on my child's classic bladder exstrophy care team?
A complete care team should include a pediatric urologist, a pediatric orthopedic surgeon, a pediatric anesthesiologist, specialized nurses, and psychosocial support staff. This multidisciplinary approach ensures all of your child's physical and emotional needs are met.
What is the success rate for the first bladder exstrophy surgery?
At dedicated high-volume centers, primary closure success rates can reach up to 87 percent. Success in this first operation is the most important factor for achieving long-term urinary control.
Should we delay surgery to travel to a bladder exstrophy specialist?
Yes, a brief delay in the primary closure surgery is perfectly safe and far less risky than having the procedure done by an inexperienced team. Traveling to a specialized center gives your child the best foundation for their long-term health.
What questions should I ask a surgeon about treating bladder exstrophy?
You should ask how many primary closures they perform annually, what their center's success rate is, and if they have a dedicated multidisciplinary team. It is also important to ask how they handle long-term psychosocial support and the transition to adult care.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many primary bladder exstrophy closures have you personally performed in the last five years?
  2. 2.What is your center's success rate for primary closure (meaning the repair stays intact without 'dehiscing' or pulling apart)?
  3. 3.Which orthopedic surgeon will be performing the pelvic osteotomy, and how many exstrophy-specific cases have they handled?
  4. 4.Will my child have a dedicated pediatric anesthesiologist experienced in long reconstructive surgeries for infants?
  5. 5.What kind of psychosocial support and mental health services are integrated into your long-term care model?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

References

References (17)
  1. 1

    Exploration of Practice Patterns in Exstrophy Closures: A Comparison Between Surgical Specialties Using a National and Institutional Database.

    Zaman MH, Davis R, Maruf M, et al.

    Urology 2019; (131()):211-216 doi:10.1016/j.urology.2019.05.027.

    PMID: 31176739
  2. 2

    How to close classic bladder exstrophy: Are subspecialty training and technique important?

    Inouye BM, Purves JT, Routh JC, et al.

    Journal of pediatric urology 2018; (14(5)):426.e1-426.e6 doi:10.1016/j.jpurol.2018.02.025.

    PMID: 29627154
  3. 3

    Prospective study on the incidence of bladder/cloacal exstrophy and epispadias in Europe.

    Cervellione RM, Mantovani A, Gearhart J, et al.

    Journal of pediatric urology 2015; (11(6)):337.e1-6.

    PMID: 26257027
  4. 4

    Outcomes of pregnancy and delivery in women with continent lower urinary tract reconstruction: systematic review of the literature.

    Bey E, Perrouin-Verbe B, Reiss B, et al.

    International urogynecology journal 2021; (32(7)):1707-1717 doi:10.1007/s00192-021-04856-1.

    PMID: 34125241
  5. 5

    Adult patients treated for bladder exstrophy at a young age: What are their current demands?

    Bazinet A, Filfilan A, Mokhtari N, et al.

    Canadian Urological Association journal = Journal de l'Association des urologues du Canada 2024; doi:10.5489/cuaj.8601.

    PMID: 38466862
  6. 6

    Surgical Treatment of Late Developmental Dysplasia of the Hip in Bladder Exstrophy: A Case Report.

    Alhussainan TS, Alahmari MS, Essa Ahmed F, et al.

    JBJS case connector 2024; (14(1)) doi:10.2106/JBJS.CC.23.00635.

    PMID: 38452165
  7. 7

    Bilateral Obturator Osteotomy: A Novel Osteotomy for Bladder Exstrophy Closure.

    Faraj S, Decante C, Alliot H, et al.

    Journal of pediatric surgery 2024; (59(9)):1841-1845 doi:10.1016/j.jpedsurg.2024.03.058.

    PMID: 38664181
  8. 8

    The Effects of an Order-Assist Mobile Application on Pediatric Anesthesia Safety: An Observational Study.

    Shim JW, Kim CJ, Kim JY, et al.

    Children (Basel, Switzerland) 2023; (10(12)) doi:10.3390/children10121860.

    PMID: 38136062
  9. 9

    Psychiatric morbidity in bladder exstrophy-epispadias complex: A systematic review with a population-based case-control study.

    Kymäläinen E, Pakkasjärvi N, Pape B, et al.

    Journal of pediatric urology 2026; (22(3)):105795 doi:10.1016/j.jpurol.2026.105795.

    PMID: 41719822
  10. 10

    Long-term psychosexual adjustment of adults born with classic bladder exstrophy.

    Paraboschi I, Sampogna G, Di Grazia M, et al.

    Journal of pediatric urology 2024; (20(4)):631-640 doi:10.1016/j.jpurol.2024.04.010.

    PMID: 38710600
  11. 11

    The Genomic Architecture of Bladder Exstrophy Epispadias Complex.

    Beaman GM, Cervellione RM, Keene D, et al.

    Genes 2021; (12(8)) doi:10.3390/genes12081149.

    PMID: 34440323
  12. 12

    Multidisciplinary perioperative management of cloacal exstrophy bladder closure: A single institution's approach.

    Heap D, Haffar A, Hoeck C, et al.

    Journal of pediatric urology 2026; (22(2)):105697 doi:10.1016/j.jpurol.2025.12.013.

    PMID: 41521080
  13. 13

    Creation and Development of a Transgender Center of Excellence.

    Blackman C, Parks J, Gilbert C, Liang F

    Clinics in plastic surgery 2025; (52(4)):563-572 doi:10.1016/j.cps.2025.06.011.

    PMID: 41093471
  14. 14

    Health-related quality of life in Brazilian adults with bladder exstrophy-epispadias complex: a cross-sectional study on urinary continence, sexual function, and body image.

    Onofre LS, Onofre PSC, Ascar PCB, et al.

    Journal of pediatric urology 2026; (22(1)):105671 doi:10.1016/j.jpurol.2025.11.010.

    PMID: 41390281
  15. 15

    [Transition in mental health from childhood to adulthood: A scoping review].

    Guerra-Ortega ADC, Rodríguez-Suárez CA, González-de la Torre H

    Anales del sistema sanitario de Navarra 2025; (48(1)).

    PMID: 39936888
  16. 16

    Long-Term Orthopaedic and Radiological Outcomes of Symphysis Approximation without Osteotomy in Primary Bladder Exstrophy Repair.

    Promm M, Hofbauer R, Brandl R, et al.

    European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie 2025; (35(3)):195-200 doi:10.1055/s-0044-1791961.

    PMID: 39438003
  17. 17

    Complications of delayed and newborn primary closures of classic bladder exstrophy: Is there a difference?

    Morrill CC, Manyevitch R, Haffar A, et al.

    Journal of pediatric urology 2023; (19(3)):249.e1-249.e8 doi:10.1016/j.jpurol.2023.01.001.

    PMID: 36690520

This page provides educational guidance on building a care team for classic bladder exstrophy. Always consult with an experienced pediatric urologist to discuss the best surgical approach and care plan for your child.

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