Bladder Exstrophy

Other names
Types
Causes
Symptoms and signs
Diagnostic tests
Non-pharmacological treatments (therapies & other supports)
Drug treatments
Dietary molecular supplements
Drugs for immunity/regenerative/stem-cell
Surgeries
Prevention tips
When to see doctors
What to eat and “what to avoid
FAQs

Bladder exstrophy is a rare birth defect. It happens when a baby’s lower tummy wall and the front wall of the bladder do not close before birth. Because of this, the bladder is open on the outside of the body. You can see the inner surface of the bladder, like a wet red plate, on the lower belly. Urine leaks out all the time because the bladder cannot hold it. The bones of the pelvis are also pulled apart at the front (the pubic bones are wide apart). The genitals and the urethra (the tube that carries urine) are split or placed in the wrong position. These changes are present at birth.

Bladder exstrophy is a rare birth condition where a baby’s lower belly wall and bladder do not close inside the body before birth. The bladder sits open on the outside of the abdomen, the pelvic bones are wider apart, and the urethra and genitals can also be affected. Because the bladder is open, urine leaks continuously and the skin can get irritated. The first goal of care is early surgery to close the bladder and belly wall, protect the kidneys, and later help the child gain urine control. Care is lifelong and involves surgeons, urologists, nurses, therapists, and counselors. NCBI+2Children’s Hospital of Philadelphia+2

Bladder exstrophy belongs to a group of related conditions called the exstrophy–epispadias complex. The problem begins very early in pregnancy when the lower body tissues that should meet in the middle fail to close. This failure also affects nearby structures, like the pelvic bones, the urethra, and the external genitals. Because the bladder is exposed, the skin around it gets irritated by urine, and germs can enter easily, which can lead to infections. Later in life, people may face problems with urine control, kidney health, sexual function, body image, and fertility. Modern surgery can close the bladder and bring bones and soft tissues together. Many children grow up to have good kidney function and active lives with the right care.

Other names

People may use different names for this condition:

Classic bladder exstrophy (the most common form).
Exstrophy–epispadias complex (the wider family of related problems).
Bladder plate exstrophy (describes the exposed bladder “plate”).
EEC (short for exstrophy–epispadias complex).
Some older texts simply say “exstrophy of the bladder.”

Types

Doctors see a spectrum from mild to severe. Here are the main types, explained simply:

Isolated epispadias
Only the urethra and genitals are split on the top side (dorsal split). The bladder stays inside. Urine control can still be poor. This is the mild end of the spectrum.
Classic bladder exstrophy
The bladder is open on the belly. The pubic bones are wide apart. The urethra and genitals are split and misplaced. This is the usual form people mean when they say “bladder exstrophy.”
Covered exstrophy
The bladder is very abnormal and almost open, but thin skin covers it. The belly wall is still not closed correctly.
Duplicate or pseudo-exstrophy variants
Very rare patterns where parts of the bladder or belly wall form in unusual ways. The pelvis is often wide, and the genitals may be split.
Cloacal exstrophy (OEIS complex)
This is the most severe form. The bladder and intestines are split and open on the belly. “OEIS” stands for Omphalocele, Exstrophy, Imperforate anus, and Spinal defects. Babies need urgent and complex care.

Causes

Bladder exstrophy is congenital (present at birth). There is no single cause. Most experts believe it comes from a mix of genes and early pregnancy events that affect midline closure of the lower body. Evidence is still growing. Below are 20 factors and mechanisms that researchers discuss. Some are proven mechanisms (how the defect forms). Others are risk associations seen in studies. Not all are present in every child.

Failure of lower belly wall closure
Early in pregnancy, tissues that should meet in the middle do not fuse. This leaves a gap where the bladder should be inside.
Early rupture of the cloacal membrane
The thin membrane that covers the lower midline can break too soon. When it breaks, inner organs cannot get covered and stay exposed.
Poor migration of mesenchyme (supporting tissue)
The “packing” tissue that should move in to build strong walls does not migrate well. The belly wall and bladder front do not form.
Abnormal separation of the urinary and digestive tracts
The early common cavity (cloaca) does not split the usual way. This error can lead to epispadias, exstrophy, or even cloacal exstrophy.
Pelvic bone development changes
The pubic bones fail to meet at the front (diastasis). This bony change is part of the same midline closure problem.
Genetic susceptibility (polygenic)
Most cases do not follow a single-gene pattern. But having certain gene variants may raise risk. Studies suggest multiple small genetic effects.
Family history
The chance is slightly higher if a parent or sibling has exstrophy–epispadias complex. The overall recurrence risk is still low, but it is higher than in the general population.
Male sex predominance
Classic bladder exstrophy happens more often in boys than in girls. That pattern hints at sex-linked developmental influences.
Cloacal exstrophy chromosomal findings (in some cases)
A few children with the most severe form have chromosomal issues or complex genetic signals. This is not true for most classic exstrophy cases.
Embryologic timing vulnerability
A very short time window in the first trimester is critical. Disruption during that window can cause exstrophy. The exact “timing hit” may differ between fetuses.
Maternal health conditions (general association)
Some studies explore links with diabetes, obesity, or low folate status. Results vary and are not definitive.
Maternal smoking (possible risk)
A few reports suggest an association. Evidence is mixed. Not all studies agree.
Alcohol and other exposures (uncertain)
Data are limited. Research is ongoing. Doctors still advise avoiding alcohol and non-prescribed drugs in early pregnancy.
Certain medications in early pregnancy (uncertain)
Most medicines are safe, but a few may pose risks in early development. Always review medicine safety with obstetric clinicians before and during pregnancy.
Assisted reproductive technologies (explored association)
Some studies examine small risk shifts with IVF/ICSI. It is hard to separate technology effects from underlying infertility factors.
Multiple gestation (twins) (explored association)
Carrying multiples can be linked to more birth defects overall. Specific links to exstrophy are rare and not firm.
Maternal age extremes (explored association)
Very young or older maternal age can affect some birth defect risks in general. Evidence for exstrophy is not conclusive.
Placental or vascular events (theoretical)
Early blood flow changes to the developing lower midline might disturb normal closure. This is a proposed mechanism, not proven.
Environmental agents (uncertain)
Some chemicals can disturb development in animal models. Human data for exstrophy are limited. Avoid harmful exposures when trying to conceive and during pregnancy.
Chance (stochastic events)
Many cases have no clear trigger. Random events in cell growth and tissue folding can lead to rare outcomes like exstrophy.

Key point: For most families, no one “caused” this. Parents do not cause exstrophy by something they did or did not do. The exact cause is often unknown.

Symptoms and signs

Symptoms depend on age, anatomy, and surgery history. Here are 15 common features, explained simply:

Open bladder on the belly at birth
A red, moist bladder plate is visible below the belly button. Urine leaks from it.
Constant urine leakage (incontinence)
There is no normal storage. Urine drips or sprays all the time until the bladder is reconstructed.
Skin irritation and rash
Urine on the skin causes redness, soreness, and sometimes infection. Careful cleaning and barrier creams help.
Wide gap between pubic bones
The pelvis looks broader at the front. This can affect posture and walking if not corrected.
Abnormal belly button and lower tummy shape
The umbilicus sits low, and the lower belly looks split or raised at the edges.
Epispadias in boys
The penis is short and split on the top side. The urinary opening is on the upper surface. Erections and fertility can be affected later.
Epispadias in girls
The clitoris may be split. The urethral opening is displaced. The vagina may sit more forward and be small or short.
Recurrent urinary infections
Bacteria can enter easily. Some people get repeated UTIs if urine does not drain well or if reflux is present.
Vesicoureteral reflux
Urine shoots backwards from the bladder into the kidneys. This can harm kidneys over time.
Kidney function stress
Long-term high pressure, infections, or reflux can slowly reduce kidney function if not treated and monitored.
Bladder growth and capacity problems
The exstrophic bladder can be small and stiff. It may need surgery to increase size or improve control.
Pelvic floor weakness
The muscles that help hold urine are weak or misplaced. This adds to leakage.
Sexual function challenges
Because of anatomy changes and scarring, intercourse and erections may be difficult without reconstruction and support.
Fertility and pregnancy issues
Many people can have children, but they may need specialized care. Cesarean delivery is common after major pelvic reconstruction.
Psychosocial stress
Body image concerns, odor worries, and continence issues can affect mood and social life. Counseling helps.

Diagnostic tests

Diagnosis is usually obvious at birth from the exam. Tests confirm details, check kidneys, plan surgery, and follow long-term health. Here are 20 tests grouped by category.

Physical examination

Newborn inspection of lower belly and genitals
The doctor looks for an open bladder plate, low belly button, and split genitals. This confirms the diagnosis right away and guides urgent care.
Palpation of the bladder plate and surrounding tissues
Gentle touch checks tissue health, moisture, and any bleeding. The doctor also notes the size and shape of the bladder plate to plan surgery.
Anal, spine, and limb examination
The doctor checks for an imperforate anus, spinal dimples, foot deformities, and hip positions. These checks look for related problems, especially in cloacal exstrophy.
Pelvic width and hip assessment
A wide gap between pubic bones is typical. The exam helps plan if and when to bring the bones closer (pelvic osteotomy) during closure.

Manual tests

Gentle urethral catheter pass (age-appropriate)
In selected cases, careful catheter placement tests urethral patency and position. This helps map the urinary channel for surgery.
Pelvic floor manual assessment
In older children or adults, a clinician may assess pelvic muscle tone and coordination by a gloved finger exam (rectal or vaginal). This helps plan therapy for continence.

Lab and pathological tests

Urinalysis
Looks for white cells, blood, and protein. It screens for infection and inflammation.
Urine culture
Grows bacteria from urine to confirm a UTI and choose the right antibiotic.
Serum creatinine and BUN
These blood tests check kidney function over time. Stable numbers suggest kidneys are safe.
Electrolytes and bicarbonate
These tests look for salt and acid–base problems from chronic kidney or urinary issues.
Genetic testing and karyotype (when indicated)
If sex organs are unclear or if cloacal exstrophy is suspected, chromosome studies and targeted genetic panels help clarify diagnosis and counsel families.
Pathology of excised tissue (surgical specimens)
When tissues are removed or reshaped, a pathologist checks for metaplasia, inflammation, or dysplasia. This is important because chronic exposure can change the bladder lining.

Electrodiagnostic studies

Uroflowmetry
The patient urinates into a special device that records flow rate over time. The shape of the curve shows how the outlet and bladder work together.
Urodynamic cystometry with pressure–flow study
Small tubes measure pressures as the bladder fills and empties. This shows bladder capacity, stiffness, and leak pressures—key data for continence planning.
Pelvic floor EMG during urodynamics
Sticky sensors or small needles record muscle activity. This tells whether pelvic muscles relax or tighten at the right times.

Imaging tests

Prenatal ultrasound
Sometimes, doctors suspect exstrophy before birth. Clues include a small or absent bladder image, a low belly wall mass, and an umbilical cord placed low. Prenatal findings help plan delivery at a specialized center.
Fetal MRI (selected cases)
MRI can show the belly wall, bladder, bowel, and spine in more detail. It helps when ultrasound images are unclear.
Postnatal renal and pelvic ultrasound
After birth and during follow-up, ultrasound checks kidneys for swelling (hydronephrosis), scans the ureters, and looks at the reconstructed bladder.
Voiding cystourethrogram (VCUG)
Contrast dye is put into the bladder, and X-ray pictures are taken while the bladder fills and empties. This test detects reflux and shows urethra shape and function.
Renal scintigraphy (MAG3 or DMSA scan)
A small amount of tracer shows kidney drainage (MAG3) or scarring (DMSA). These scans help protect kidneys over the long term.

Non-pharmacological treatments (therapies & other supports)

Early bladder closure & protective care (pre- and post-op nursing)
Nursing teams protect the exposed bladder with sterile, moist dressings, prevent infection, manage fluids, and prepare for surgery. After closure, they monitor urine output, pain, skin, and drains, and teach parents wound and catheter care. This careful support reduces complications and protects kidney function while the surgical repair heals. PMC+1
Skin care around urine leakage
Gentle cleansing, barrier ointments, frequent diaper/linen changes, and moisture-wicking materials protect fragile infant skin exposed to urine before and after surgery. Good skin routines ease pain, reduce infection risk, and help babies feed and sleep better, which supports growth. Boston Children’s Hospital+1
Pelvic floor physical therapy (age-appropriate)
As children grow, specialist physios use biofeedback, relaxation/activation training, and timed voiding plans to improve sphincter control and coordination with breathing and abdominal muscles. This can reduce urgency and leakage and support continence goals after reconstruction. Children’s Hospital of Philadelphia+1
Bladder training & timed voiding
Structured toileting schedules, “double voiding,” and diaries can reduce accidents and help families spot patterns (fluids, foods, stress). In select cases, clean intermittent catheterization (CIC) is taught to fully empty the bladder with minimal infection risk. NCBI
Psychological counseling & peer support
Children and families may face body-image worries, school concerns, and anxiety. Counseling, school advocacy, and connection to exstrophy communities improve coping, confidence, and quality of life. Children’s Hospital Los Angeles+1
Family counseling & caregiver training
Coaching parents on wound care, catheterization, medication schedules, fluid goals, and school plans improves adherence and child independence. Sibling support reduces stress at home. pediatricurologycasereports.com
Constipation prevention program
Constipation worsens bladder symptoms and UTIs. High-fiber foods, adequate fluid, toilet posture, and (when prescribed) stool regimens can improve bladder emptying and leakage. PMC+1
UTI prevention habits
Good hydration, regular voiding/CIC as directed, hygiene education, and early symptom reporting help prevent kidney infections and protect long-term kidney health. NCBI
Post-op activity and hip/pelvic precautions
After closure (sometimes with pelvic osteotomies), careful positioning and activity limits protect bone and soft-tissue repairs while they heal. Teams use splints/casts as needed. PMC
School-based plans
504/IEP-style plans can allow bathroom access, supplies, extra time, and privacy for catheterization. Coordinated letters from the clinical team help normalize school life. Children’s Hospital of Philadelphia
Adolescent & sexual health counseling
Teens benefit from honest talks about body changes, intimacy, fertility, and contraception tailored to their reconstruction history, improving well-being and safety. NCBI
Transition-to-adult-care program
Structured transfer to adult urology helps maintain surveillance for kidneys, continence, sexual function, and pregnancy planning. auanews.net
Pain management education (non-drug)
Positioning, heat/cold as advised, relaxation, and distraction techniques complement medicines to keep pain controlled and reduce anxiety after procedures. PMC
Nutrition counseling
Balanced calories and protein aid wound healing; fiber and fluids reduce constipation; irritant foods are reviewed if urgency is a problem. University of Iowa Health Care+1
Wound/ostomy nurse input
Specialist nurses assist with dressings, stoma care if created, appliance fit, and leakage troubleshooting to prevent skin breakdown. PMC
Infection control education
Hand hygiene, catheter technique, and supply care reduce bacterial entry, protecting repairs and kidneys. NCBI
Growth and development follow-up
Regular checks of growth, bone hips/pelvis, kidneys, electrolytes, and continence milestones catch problems early and guide therapy. NCBI
Community resource navigation
Linking families to national exstrophy groups, travel help, and mental-health resources reduces isolation and improves adherence. research.childrenshospital.org
Telehealth follow-ups
Video visits between in-person appointments support wound checks, catheter troubleshooting, and med adjustments, cutting travel burden. auanews.net
Care coordination
A named coordinator aligns surgery dates, imaging, therapy, school notes, and refills so families don’t have to manage everything alone. Boston Children’s Hospital

Drug treatments

Important: There is no “disease-specific” pill for bladder exstrophy; medicines support continence, reduce bladder spasms, prevent/treat UTIs, control pain, and protect kidneys around surgeries. Always use pediatric dosing from your clinician.

Mirabegron oral suspension (MYRBETRIQ® Granules) – β3-agonist
Purpose/Mechanism: Relaxes bladder muscle to store urine at lower pressure; indicated for neurogenic detrusor overactivity (NDO) in children ≥3 years. Dose/Time: Once daily; weight/renal function adjust. Notes: Can raise blood pressure; monitor pulse/BP. Helpful for urgency/leaks when antimuscarinics aren’t tolerated. Side effects: Hypertension, nasopharyngitis, GI upset. FDA Access Data+1
Solifenacin oral suspension (VESIcare LS®) – antimuscarinic
Purpose/Mechanism: Blocks muscarinic receptors to calm detrusor overactivity; FDA-approved for pediatric NDO ≥2 years. Dose/Time: Weight-based once daily; monitor for constipation/dry mouth. Side effects: Dry mouth, constipation, blurred vision, urinary retention risk. FDA Access Data+1
Oxybutynin (Ditropan®/Ditropan XL®; syrup/tablet/patch) – antimuscarinic
Purpose/Mechanism: Reduces involuntary bladder contractions; pediatric labeling exists for detrusor overactivity with neurologic conditions; commonly used off-label in complex pediatric urology pathways. Dose/Time: Age- and route-specific; titrate to effect. Side effects: Dry mouth, flushing, constipation, blurred vision; CNS effects possible. FDA Access Data+1
Tolterodine (Detrol®/Detrol LA®) – antimuscarinic
Purpose/Mechanism: Alternative antimuscarinic for urgency/leaks. Peds note: Efficacy not established in pediatrics in U.S. labeling; peds studies exist but approval lacking; use is clinician-judged. Side effects: Dry mouth, constipation, UTI risk slightly higher than placebo in some pediatric trials. FDA Access Data+1
Phenazopyridine (short-course urinary analgesic)
Purpose/Mechanism: Local urinary tract analgesic for burning/urgency after catheterization or UTI treatment initiation. Note: Symptom relief only; not an antibiotic; avoid prolonged use. Side effects: Orange urine discoloration, GI upset; rare hemolysis in G6PD deficiency—specialist guidance needed. NCBI
Acetaminophen (paracetamol) – analgesic/antipyretic
Purpose/Mechanism: Post-op pain and fever control to aid feeding/sleep and avoid high bladder pressure from pain. Dose: Weight-based pediatric dosing; avoid exceeding daily limits; monitor liver disease. Side effects: Rare at correct dose; overdose hepatotoxic. PMC
Ibuprofen – NSAID
Purpose/Mechanism: Post-op inflammatory pain relief; reduces prostaglandin-mediated pain and swelling. Dose: Weight-based; avoid if kidney function compromised or bleeding risk high. Side effects: Gastritis, renal effects; clinician supervision is essential. PMC
Antibiotics (peri-operative prophylaxis, culture-guided therapy)
Purpose/Mechanism: Short preventive courses around surgery and targeted treatment for UTIs to protect kidneys and repairs. Agents: Selected per culture and local resistance (e.g., cephalosporins, TMP-SMX, amoxicillin/clavulanate). Side effects: Drug-specific; stewardship is crucial to avoid resistance. PMC+1
Antibiotic prophylaxis (select cases)
Purpose/Mechanism: Low-dose nightly antibiotics may be used temporarily in high-risk children with reflux, CIC, or repeated UTIs, based on urologist judgment; reviewed regularly to stop when safe. Risks: Resistance, side effects; use narrow spectrum. NCBI
Anticholinergic combinations
Purpose/Mechanism: In refractory detrusor overactivity, clinicians sometimes combine low-dose antimuscarinic with mirabegron to balance efficacy and side effects (specialist use). Monitoring: BP, constipation, dry mouth, retention. NCBI
Topical anesthetics for catheterization
Purpose/Mechanism: Lidocaine jelly reduces discomfort and helps gentle catheter passage, lowering trauma and infection risk. Caution: Allergy screening; correct dosing. PMC
Stool softeners/laxatives (e.g., polyethylene glycol) when prescribed
Purpose/Mechanism: Keep stools soft to reduce pelvic floor strain, supporting bladder emptying and continence. Note: Part of bowel-bladder dysfunction protocols under clinician guidance. Frontiers
Antispasmodics intra-/post-op (specialist use)
Purpose/Mechanism: Reduce bladder spasms after surgery or catheter changes to protect suture lines and comfort. Examples: Short courses per hospital protocol. PMC
Antiemetics post-op (e.g., ondansetron)
Purpose/Mechanism: Control nausea to maintain hydration and medication adherence after anesthesia. PMC
Topical barrier creams (zinc oxide, petrolatum)
Purpose/Mechanism: Not “drugs” for the bladder, but medicated barriers prevent urine-related dermatitis around the perineum. Boston Children’s Hospital
Probiotics (adjunct, selective use)
Purpose/Mechanism: Proposed to balance gut/vaginal flora and possibly lower rUTI risk; evidence in children is mixed and not definitive; use only if clinician agrees. Side effects: Generally mild GI symptoms. PMC+1
Cranberry extracts (adjunct, selective use)
Purpose/Mechanism: Proanthocyanidins may reduce bacterial adherence to urothelium; evidence varies by population and product; not a treatment for active UTI. Cochrane Library
D-mannose (not routinely recommended)
Purpose/Mechanism: Sugar intended to block E. coli adhesion; a large 2024 RCT showed no preventive benefit in women; pediatric exstrophy data lacking. Avoid routine use unless advised. JAMA Network+1
Antihypertensives review with mirabegron
Purpose/Mechanism: Because mirabegron may raise BP, clinicians check existing meds and vitals to keep treatment safe. FDA Access Data
Allergy/asthma med review
Purpose/Mechanism: Some cold remedies/antihistamines have anticholinergic effects that can worsen retention or interact with bladder meds; pharmacists help reconcile. Connecticut Children’s

Dietary molecular supplements

Cranberry PAC extract
Standardized proanthocyanidins (PACs) may stop bacteria sticking to bladder walls, possibly lowering UTI risk in some groups; effects vary and products differ. Not for treating an active UTI. Typical dose: Products often target ~36 mg PAC/day; follow product labeling and clinician advice. Cochrane Library
Probiotics (e.g., Lactobacillus spp.)
May help microbiome balance; data in children are mixed, with some analyses showing no clear reduction in recurrent UTIs. Consider only as a supervised trial. PMC
Vitamin C (ascorbic acid)
Proposed to acidify urine and impair bacterial growth; human evidence is inconsistent; may help wound healing nutritionally. Use cautiously and avoid high doses without advice. PMC
D-mannose
Large controlled trial found no prevention benefit in adults with recurrent UTI; not recommended routinely in exstrophy without specific guidance. JAMA Network
Psyllium fiber (for constipation)
Soluble fiber softens stools, supports regularity, and may indirectly improve bladder symptoms by relieving bowel–bladder cross-talk. Dosing is age-based; increase fluids. PMC
Magnesium citrate (constipation plan, if prescribed)
Magnesium salts draw water into the bowel to ease hard stools; only use in pediatric regimens designed by clinicians. Frontiers
Omega-3 fatty acids
General anti-inflammatory nutrition support; not specific to exstrophy but may aid overall recovery and skin integrity when diet is limited. NCBI
Zinc (wound/skin support when deficient)
Zinc supports epithelial repair; consider only if dietary intake is poor or labs show deficiency; avoid unnecessary supplementation. PMC
Multivitamin (age-appropriate)
Covers gaps in picky eaters during recovery; not a treatment but supports growth and healing alongside a balanced diet. Boston Children’s Hospital
Electrolyte solutions (oral rehydration)
Useful during illness to maintain hydration and safe urine flow; choose pediatric-formulated solutions as advised. NCBI

Drugs for immunity/regenerative/stem-cell

There are no FDA-approved “immunity boosters,” stem-cell drugs, or regenerative medicines that treat bladder exstrophy. Research in tissue-engineered bladders and stem-cell–seeded scaffolds is ongoing, but not standard care and not approved for routine pediatric use. Families should avoid unregulated “stem-cell” clinics. (Below are educational notes—not recommendations.)

Experimental mesenchymal stem cells (MSCs) – investigated in animals and early research for bladder regeneration; not approved; risks and long-term durability are unresolved. Frontiers+1
Bio-synthetic scaffolds (acellular matrices) – studied to capture endogenous cells and rebuild bladder layers in models; clinical translation remains limited. MDPI
Cell-seeded constructs – early reports suggested feasibility, but consistent long-term pediatric outcomes and approvals are lacking. Nature
Urine-derived stem cells (UDSCs) research – attractive for noninvasive harvest, but still preclinical/early translational. Frontiers
Peritoneal bioreactor concepts – experimental approaches not part of clinical care pathways. ResearchGate
General “immune boosters” – no evidence for any over-the-counter product to prevent UTIs or improve continence in exstrophy; focus on vaccines per schedule, sleep, nutrition. NCBI

Surgeries

Complete Primary Repair of Exstrophy (CPRE)
A single-stage operation in specialized centers to close the bladder and abdominal wall, align pelvic bones (often with osteotomies), reconstruct the urethra/genitals, and create a low-pressure reservoir—aiming for better long-term continence and fewer operations. auau.auanet.org+1
Staged reconstruction
Some teams use staged closure (initial bladder/abdominal wall closure in infancy, later epispadias/genital repair, then bladder neck reconstruction) tailored to anatomy and center expertise. PMC
Bladder neck reconstruction (BNR) ± ureteral reimplantation
Improves outlet resistance and continence; reimplantation treats reflux to protect kidneys when needed. SpringerOpen
Augmentation cystoplasty (bladder enlargement) ± continent catheterizable channel (Mitrofanoff)
If the native bladder remains too small/high-pressure, intestine (or other tissue) enlarges capacity; a catheterizable channel allows painless CIC via the belly wall for independence. SpringerOpen
Bladder neck closure (select, refractory cases)
For children who cannot achieve continence with other options, closing the neck with a catheterizable channel can provide dryness and protect kidneys. SpringerOpen

Prevention tips

You cannot “prevent” being born with exstrophy, but you can prevent complications:

Keep up on scheduled follow-ups (kidneys/bladder imaging, labs). NCBI
Hydration targets set by your clinic; steady urine flow helps prevent UTIs. NCBI
Constipation control (fiber, fluids, clinician-guided regimen). Frontiers
Catheter technique: clean hands, proper lubricants, single-use or cleaned as taught. PMC
Skin protection with barrier creams and gentle cleansing. Boston Children’s Hospital
Timed voiding/CIC exactly as prescribed. NCBI
Surgery aftercare: protect casts/splints, lift/position as taught. PMC
Food diary for bladder irritants if urgency worsens (caffeine, citrus, carbonation, spicy foods can irritate some patients). University of Iowa Health Care
School plan for bathroom access and catheter privacy. Children’s Hospital of Philadelphia
Mental health check-ins at key milestones; ask early for support. Children’s Hospital Los Angeles

When to see doctors

See your team promptly for fever, back pain, vomiting, very cloudy/foul urine, blood in urine, new leakage after being dry, catheter pain or blockage, wound redness or separation, swelling of the genital/abdominal repair, uncontrolled pain, poor feeding/weight loss, or high blood pressure readings. Urgent evaluation protects kidneys and surgical repairs. NCBI

What to eat and “what to avoid

Eat more of:

Water across the day (age-appropriate targets from your team).
High-fiber foods (oats, fruits, vegetables, beans) to prevent constipation.
Lean proteins for healing. • Probiotic foods (yogurt) if tolerated.
Balanced electrolytes during illness. Frontiers

Consider limiting if they worsen symptoms:

Caffeine (coffee/tea/chocolate), carbonated drinks, citrus/tomato, very spicy/MSG-heavy foods, artificial sweeteners—these can irritate some bladders; keep a diary to find personal triggers. (These foods don’t cause UTIs but can worsen urgency.) University of Iowa Health Care+1
Notes on supplements: cranberry or probiotics may help some people prevent UTIs, but evidence is mixed, and they do not treat active infection. Discuss before starting. Cochrane Library+1

FAQs

Is there a medicine that cures exstrophy?
No. Surgery repairs anatomy. Medicines support continence, comfort, and UTI prevention/treatment. NCBI
Will my child be continent?
Many children achieve social continence with staged or primary repair plus therapies; some need catheterizable channels or augmentation. Plans are individualized. PMC+1
Are kidneys at risk?
Yes, if bladder pressures are high or UTIs occur. Regular follow-up and tailored surgeries/medicines protect kidneys. NCBI
What is CPRE?
“Complete Primary Repair of Exstrophy” aims to repair bladder, abdominal wall, and genital/urethral anatomy in one setting at specialized centers. auau.auanet.org
Why are pelvic osteotomies sometimes done?
To bring widened pelvic bones together so soft tissues can close without tension and the bladder/urethra align better. PMC
Will my child need more than one surgery?
Often, yes—depending on anatomy, healing, continence goals, and reflux. Your team stages procedures to minimize risk and maximize function. PMC
Can pelvic-floor therapy really help a child?
Yes—age-appropriate biofeedback and muscle training improve coordination and continence in selected patients. Children’s Hospital of Philadelphia
Are antimuscarinic or β3-agonist drugs safe in kids?
They can be when correctly prescribed and monitored; several have pediatric labeling for NDO (solifenacin, mirabegron; oxybutynin has pediatric labeling for detrusor overactivity with neurologic conditions). FDA Access Data+2FDA Access Data+2
Should we give D-mannose?
Not routinely; a large RCT showed no preventive benefit in adults with recurrent UTI. Ask your clinician before use. JAMA Network
Do cranberry products work?
They may reduce UTI risk in some groups; results vary by dose/formulation. They do not treat active infection. Cochrane Library
What about probiotics?
Evidence for preventing UTIs is mixed and not definitive; discuss risks/benefits for your child. PMC
Are stem-cell treatments available now?
No approved stem-cell treatments for exstrophy exist; research is ongoing, and unregulated clinics should be avoided. Frontiers
How important is constipation control?
Very—constipation worsens bladder symptoms and UTIs; treating it often improves continence. Frontiers
Do “bladder irritant” foods matter?
Some children are sensitive to caffeine, citrus, carbonation, or spicy foods; a food diary helps identify triggers; personalize rather than follow rigid bans. University of Iowa Health Care
Where can we find community support?
Reputable hospital programs and the Association for the Bladder Exstrophy Community provide education and peer support. research.childrenshospital.org

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