Health condition · Clinically reviewed
Bladder exstrophy, the EEC spectrum and UK designated centre care.
A rare congenital anomaly with a very specific UK pathway, staged reconstruction at Great Ormond Street or Alder Hey, followed by lifelong follow up.
Why trust this guide
- 01
Clinically reviewed
Written by our editorial team and reviewed by a registered UK clinician before publication.
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Sourced from guidance
Checked against BAPU, BAUS and NHS England commissioning standards you can see at the end.
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Current for 2026
Reflects the two nationally designated centres and modern staged and complete primary repair approaches.
Key facts
Bladder exstrophy at a glance.
The essentials in plain English, what it is, how rare it is, and how the UK organises care.
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What it is
A rare congenital anomaly where the anterior abdominal wall and bladder fail to close, leaving bladder mucosa exposed on the abdomen.
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How rare
Around 1 in 30,000 to 1 in 50,000 live births, with a male to female ratio of roughly 2 to 1.
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EEC spectrum
Sits within the exstrophy epispadias complex, from isolated epispadias to classic bladder exstrophy to cloacal exstrophy.
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Antenatal clues
Absent bladder filling on ultrasound, low set umbilicus, wide pubic bones and raised maternal serum AFP.
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UK services
Care is commissioned as a supraregional service at two nationally designated centres, Great Ormond Street and Alder Hey.
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Lifelong follow up
Urology, orthopaedics, fertility, psychosocial and cancer surveillance continue into adult life.
Why this guide matters
A single pathway from birth to adult life.
Bladder exstrophy needs specialist care from the first hours of life, and continued input long into adulthood. Three points shape the rest of this page.
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Two designated centres
All UK newborns with bladder exstrophy are cared for at Great Ormond Street or Alder Hey, a highly specialised commissioned service.
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Staged reconstruction
Closure, epispadias repair and bladder neck reconstruction typically span the first five years, with complete primary repair in selected infants.
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Lifelong follow up
Renal function, continence, fertility and cancer surveillance continue into adulthood through specialist adult exstrophy clinics.
How the diagnosis is made
From antenatal scan to a designated centre plan.
Increasingly the diagnosis is suspected before birth, giving families and teams time to plan delivery and early surgery.
Phase 1 · Assessing
Antenatal signs and newborn examination
Phase 2 · Confirming
EEC spectrum and associated anomaly checks
Phase 3 · Preparing
Transfer and reconstructive planning
- 01
Assessing
Antenatal ultrasound signs
A persistently non visualised bladder, low set umbilicus, wide pubic bones and a raised maternal serum AFP raise suspicion in utero.
- 02
Assessing
Prenatal counselling
Referral to a designated centre for detailed counselling, planning of delivery and early transfer arrangements.
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Assessing
Newborn examination
The diagnosis is obvious at birth with exposed bladder mucosa, epispadias, pubic diastasis and a widened, shortened phallus or bifid clitoris.
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Confirming
Assessment of the EEC spectrum
Distinguishing isolated epispadias, classic bladder exstrophy and cloacal exstrophy guides the reconstructive plan.
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Confirming
Associated anomaly screen
Renal tract imaging, spinal imaging in suspected cloacal exstrophy, and checks for inguinal hernia and malrotation.
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Preparing
Transfer to a designated centre
Immediate liaison with Great Ormond Street or Alder Hey for combined paediatric urology, plastic surgery and orthopaedic input.
- 07
Preparing
Reconstructive planning
The team decides between staged repair and complete primary repair of exstrophy, with or without osteotomy.
Typical timeline: antenatal suspicion, immediate postnatal transfer and reconstruction within days to weeks.
Symptoms
What bladder exstrophy looks like.
The features that make the diagnosis obvious at birth, and the differences that place a baby on the EEC spectrum.
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Exposed bladder plate
The bladder mucosa is open on the lower abdomen at birth, requiring careful covering and moisture protection.
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Epispadias
The urethral meatus opens on the dorsum of the penis in males, or as a bifid clitoris in females.
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Pubic diastasis
A wide separation of the pubic bones which contributes to the anterior wall defect and gait changes.
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Genital differences
A widened and shortened phallus in males, a short vagina with wide labia and a bicornuate uterus in females.
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Umbilical and hernia findings
A low set umbilicus, inguinal hernia and occasional malrotation frequently accompany the anomaly.
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Orthopaedic gait
Out turned hips and a waddling gait relate to the pelvic ring diastasis and pelvic muscle arrangement.
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Continence and sensation
Preserving bladder neck function and pelvic sensation are important reconstructive goals from the start.
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Cloacal exstrophy features
The severe end of the spectrum adds hindgut exstrophy, omphalocele, imperforate anus and a neural tube defect.
Treatment
How bladder exstrophy is treated in the UK.
A staged or complete primary reconstruction at a designated centre, with continence surgery and augmentation as the child grows.
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Primary bladder closure
Closure of the bladder, posterior urethra and abdominal wall within 72 hours of birth, or delayed to 6 to 12 weeks with osteotomy.
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Complete primary repair (CPRE)
A single stage approach at birth that combines bladder closure with epispadias repair in selected infants.
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Epispadias repair
Usually at 6 to 12 months in males using the Cantwell Ransley technique to reconstruct the dorsal urethra and phallus.
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Bladder neck reconstruction
Young Dees Leadbetter or Kelly procedures around 4 to 5 years to build continence once the child can cooperate with training.
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Pelvic osteotomy
Anterior transverse or posterior iliac osteotomy to close the pubic diastasis and protect the closure.
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Bladder augmentation
Enlarging bladder capacity with a bowel segment, often combined with a Mitrofanoff channel for continent catheterisation.
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Urinary diversion
An ileal conduit or continent reservoir when the native bladder cannot be salvaged for safe storage.
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Lifelong specialist follow up
Renal function, upper tract imaging, continence, sexual health, fertility, orthopaedics and cancer surveillance across the life course.
What this guide is based on
The sources behind every claim on this page.
UK commissioning and specialist society standards, current at the time of last review.
Key references
Guidelines and standards we relied on.
A quiet reminder
This guide is for information, not medical advice.
Your child’s designated centre team or adult exstrophy service knows the full clinical picture. If in doubt, get seen.
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NHS England. Highly Specialised Services: Bladder Exstrophy service specification.
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British Association of Paediatric Urologists (BAPU). Standards for exstrophy care.
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British Association of Urological Surgeons (BAUS). Transition and adult exstrophy guidance.
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BEEC UK Support Group. Family and patient information on exstrophy and epispadias.
Red flags
When exstrophy care needs urgent attention.
Situations that warrant same day contact with the designated centre or a specialist adult exstrophy service.
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Bladder plate injury
Damage to exposed mucosa before closure can compromise later reconstruction, so careful transport dressings and moist protection matter.
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Failed primary closure
Dehiscence of the initial closure carries a poor long term prognosis and needs early re operation at a designated centre.
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Upper tract deterioration
Rising creatinine, new hydronephrosis or febrile UTIs signal bladder pressures or reflux that need urgent urodynamic review.
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Bladder cancer surveillance
Augmented and exstrophic bladders carry a long term cancer risk, so annual cystoscopy in adulthood is standard.
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Cloacal exstrophy at birth
The severe end of the spectrum needs immediate neonatal surgical and neurosurgical input, not routine bladder exstrophy pathways.
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Pregnancy in an exstrophy patient
High risk multidisciplinary care with planned Caesarean is required, given prolapse risk and reconstructed anatomy.
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Psychosocial distress
Body image, continence and sexual concerns can be significant and deserve specialist psychology support.
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Transition dropout
Losing contact with adult exstrophy services risks late complications, so structured handover is essential.
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Prenatal diagnosis without a plan
A suspected antenatal diagnosis without referral to a designated centre risks unplanned delivery and delayed reconstruction.
Living with it
A lifelong condition, with a clear team.
Four things that make the biggest difference year to year, from the designated centre model to peer support.
A quiet reminder
Continuity of care changes outcomes.
A steady relationship with a specialist team, from childhood through transition into adult services, protects renal function, continence and quality of life.
- 01 Team
Stay within a designated centre
Care at Great Ormond Street or Alder Hey brings together urology, plastics, orthopaedics and psychology under one roof.
- 02 Continence
Continence is a long journey
Many children need bladder neck surgery, augmentation or a Mitrofanoff channel to achieve reliable dryness.
- 03 Fertility
Plan for adult reproductive care
Men often need assisted reproduction and women benefit from pre pregnancy planning with a specialist team.
- 04 Community
Lean on peer support
The BEEC UK Support Group offers families and adults a community that understands exstrophy from the inside.
Frequently asked
Everything we get asked about bladder exstrophy.
Quick answers on the diagnosis, UK pathway, surgery, fertility and long term follow up.
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What is bladder exstrophy?
It is a rare congenital anomaly in which the anterior abdominal wall and bladder fail to close, so the bladder mucosa lies open on the lower abdomen. It is part of the exstrophy epispadias complex and is almost always accompanied by epispadias and a wide pubic diastasis.
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How common is it and who does it affect?
Classic bladder exstrophy occurs in roughly 1 in 30,000 to 1 in 50,000 live births and is around twice as common in boys as in girls. It sits on a spectrum from isolated epispadias at the mild end to cloacal exstrophy at the severe end.
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Where is bladder exstrophy treated in the UK?
NHS England commissions bladder exstrophy care as a highly specialised supraregional service at two nationally designated centres, Great Ormond Street Hospital and Alder Hey Children’s Hospital. All UK newborns with the diagnosis should be referred to one of these units.
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What operations does a child need?
Most children follow a staged pathway with primary bladder and abdominal wall closure in the newborn period, epispadias repair between 6 and 12 months, and bladder neck reconstruction for continence around 4 to 5 years. Some infants have a complete primary repair of exstrophy in a single stage, and many later need bladder augmentation with a Mitrofanoff channel.
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Will fertility be affected?
Many men have reduced fertility, often through retrograde ejaculation or azoospermia, and assisted reproduction such as ICSI is frequently needed. Women can usually conceive but pregnancy is high risk with prolapse concerns and a planned Caesarean, ideally coordinated with a specialist multidisciplinary team.
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What long term follow up is needed?
Follow up is lifelong. It covers renal function and upper tract surveillance, continence, sexual function, orthopaedic health and psychosocial wellbeing. Because augmented and exstrophic bladders carry a long term cancer risk, annual surveillance cystoscopy in adulthood is standard practice.
Related content
Keep reading.
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Bladder function
How the bladder normally stores and empties.
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Bladder stones
A relevant complication of reconstructed bladders.
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Bladder cancer
The long term surveillance concern in exstrophy.
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Benign prostate disease
Adult male urology context.
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Biliary atresia
Another rare neonatal condition needing supraregional care.
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Paediatric urology clinic
Related treatment pathway.
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Bladder augmentation clinic
Related treatment option.
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Mitrofanoff clinic
Continent catheterisable channel service.
Learn more -
Urodynamic studies
Assessment of bladder pressure and function.
Learn more -
Private MRI scan
Cross sectional imaging when needed.
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Private ultrasound
First line imaging of the urinary tract.
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