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Spina Bifida

Spina bifida includes open and closed spinal dysraphism; myelomeningocele is the open defect discussed predominantly here.[5][11] Virtually every major reconstructive technique in use today, including clean intermittent catheterization as a care standard, augmentation cystoplasty, the Mitrofanoff principle, bladder-neck reconstruction, MACE for bowel management, and multidisciplinary transitional care, was refined in this population. In the 10-clinic National Spina Bifida Patient Registry, 1,693/1,763 (96.0%) participants with myelomeningocele had impaired bladder function at their first recorded visit; the cohort included children and adults.[5][38] Lesion level only imperfectly predicts the urodynamic phenotype, so every infant with spina bifida needs urodynamic evaluation.[2]

See Neurogenic Lower Urinary Tract Dysfunction for the general framework. The reconstructive ladder discussed below is detailed in the Treatment Atlas: Intradetrusor OnabotulinumtoxinA, Bladder Augmentation, Catheterizable Channels (Mitrofanoff / Monti), and the Artificial Urinary Sphincter for outlet incompetence.

Epidemiology​

  • Birth prevalence is about 3–4 per 10,000 in the EAU epidemiology summary, and lumbar and lumbosacral lesions are the most common (about 60%).[5] Periconceptional folate supplementation lowers the risk of neural tube defects.
  • Bladder function is impaired in most patients (up to about 96% in registry data), and more than half of adults in a registry analysis report incontinence; open and closed defects can have equally severe NLUTD.[5]
  • Renal risk persists for life: in a 1,029-patient myelomeningocele cohort followed by urology (median 17 years), end-stage kidney disease risk was 0.3% at 20 years and 2.1% at 30 years, about 100 times the general population. Patients who needed early surgery for a hostile bladder had higher risk (6% versus 1.5% at 30 years).[6]
  • Fetal MMC closure (MOMS trial) reduced shunt placement by 12 months (40% versus 82%) and improved motor outcomes.[11] At school age (mean 7.4 years), fewer prenatal-repair children were reported to use CIC at least three times daily (62% versus 87%), and parents more often reported volitional voiding (24% versus 4%), but most still had bladder dysfunction and augmentation, vesicostomy and urethral dilation rates did not differ, so urodynamic follow-up remains mandatory.[12]
  • Associated anomalies: Chiari II malformation, hydrocephalus (most patients; 82% of the postnatal-repair arm in MOMS were shunted by 12 months)[11], tethered spinal cord, neurogenic bowel, orthopedic deformities, sexual dysfunction, fertility issues.

Pathophysiology​

Unlike traumatic SCI, spina bifida NLUTD reflects a developmental, non-uniform cord lesion. The lesion level on imaging correlates only loosely with urodynamic phenotype; every infant with MMC requires urodynamic testing.[2]

Typical urodynamic patterns:

PatternFrequencyImplications
DO + DSDCommonHigh-pressure storage → hostile bladder; requires aggressive early pressure reduction
DO + incompetent sphincterCommon—
Areflexic detrusor + incompetent sphincterFrequentRetention + stress leakage; overflow pattern
Areflexic + coordinated sphincterLess commonRetention dominant

Tethered cord can change urodynamics over time; new or worsening urinary or bowel symptoms in a growing spina-bifida child warrant re-imaging and neurosurgical consultation.

Initial Evaluation​

Standard at modern spina-bifida centers:

Age-specific surveillance: SBA recommends renal and bladder ultrasound, urodynamics and serum creatinine within the first three months. In stable children, ultrasound is generally every six months until age two, then yearly; urodynamics is generally yearly through age three and thereafter for clinical indications or continence planning. Recurrent symptomatic UTI, hydronephrosis or suspected bladder hostility prompts earlier investigation. In adolescence and adulthood, obtain renal and bladder ultrasound at least annually, with approximately six-month upper-tract ultrasound for high-risk neuro-urological patients, and individualize urodynamics.[5] Low muscle mass can make creatinine misleading.[3]

Management — Bladder and Bowel Decisions Across the Lifespan​

Early childhood (CIC-based)​

  • CIC is initiated in infancy for bladder hostility or inadequate emptying when indicated after SBA-recommended baseline assessment, with urodynamic surveillance and pressure management; upper-tract changes, recurrent symptomatic UTIs, or hostile urodynamics can prompt later initiation.[3] The 2025 joint spinal-dysraphism guideline gives a strong recommendation to start intermittent catheterization soon after birth in all newborns; delay may be considered only with a clearly underactive sphincter and no detrusor overactivity, with close UTI, renal ultrasound, and urodynamic monitoring.[32] Parents and then patients are taught the skill. In children on CIC, treat UTI only when symptoms and urine testing support infection, as advised by the 2025 joint guideline .[32] In a Swedish national-program cohort of 41 children with neurogenic bladder-sphincter dysfunction followed a median of 11 years (most managed from birth), no child required renal-protective surgery; one child underwent surgery for incontinence and six received botulinum-toxin injection. Renal scarring on DMSA was still found in 5/41 (two already scarred on entry at 2.5 and 3 years), more often with high baseline detrusor pressure; four of the five had a low-compliance bladder with poor adherence to treatment and follow-up.[29]
  • Antimuscarinic (oxybutynin) added at low doses in infancy for DO or poor compliance; use in infants is off-label. Labeled pediatric use begins at age 5 (immediate-release syrup or tablet, usual 5 mg twice daily, maximum 5 mg three times daily) or age 6 (extended-release, start 5 mg daily, maximum 20 mg daily) for detrusor overactivity with a neurologic condition such as spina bifida.[8] Watch for constipation, which compounds neurogenic bowel, and for reduced sweating and heat intolerance.
  • Mirabegron is FDA-approved for pediatric NDO from age 3 (granules under 35 kg; granules or ER tablets at 35 kg or more)[37]; an open-label, baseline-controlled phase 3 study found increased cystometric capacity and lower detrusor pressure at 24 weeks among 68 children and adolescents in the efficacy analysis.[9][10] For children with spina bifida and high-risk urodynamics or persistent incontinence on one antimuscarinic, add-on mirabegron can be considered as a medical option; a two-center retrospective cohort of 103 patients reported lower detrusor opening and end-filling pressures after a median 166 days, without an untreated comparator.[33] Monitor blood pressure during mirabegron treatment; the label does not recommend it for severe uncontrolled pediatric hypertension (above the 99th percentile plus 5 mm Hg for age, sex and stature).[37] Vibegron has no US pediatric NDO approval.[35] A retrospective series described add-on treatment in 13 children with antimuscarinic-resistant neurogenic bladder, including nine with spina bifida alone and one with spina bifida plus cervical epidural hematoma; eight reported less leakage.[34]
  • Bowel program. Needed and parallel to bladder care; neurogenic bowel management drives quality of life and continence (see Neurogenic Bowel for the program escalation from transanal irrigation through MACE to colostomy). In the National Spina Bifida Patient Registry (3,670 patients with MMC and neurogenic bowel, age 5 or older), only 45% were fecally continent (fewer than one accident a month); antegrade enemas were the most common treatment and had the highest associated continence rate, though this is observational and confounded by severity.[16]

Procedural options by indication​

When initial bladder treatment fails to protect the upper tracts or transurethral catheterization is impossible in a child, a cutaneous vesicostomy can provide temporary drainage.[32]

  1. Intradetrusor onabotulinumtoxinA. FDA-approved for pediatric NDO from age 5 after inadequate response to or intolerance of anticholinergic medication (200 U for patients 34 kg or more; 6 U/kg for those under 34 kg); effective for neurogenic DO with hostile bladder.[1] Do not inject during an active UTI; provide the label's periprocedural antibiotic prophylaxis.[1]
  2. Augmentation cystoplasty. The reconstructive foundation. Ileum standard; ileocecum when continent cutaneous reservoir is desired.
  3. Continent catheterizable channel (Mitrofanoff or Monti). A channel can facilitate catheterization when urethral CIC is impractical; for selected adults, AUA/SUFU states that clinicians may offer one with or without augmentation .[22] An umbilical or other abdominal stoma may facilitate CIC for wheelchair users if it is reachable from their usual seated position; assess hand function, body habitus, and caregiver support when choosing the site.[22][36] Appendix (classic Mitrofanoff) or reconfigured ileum (Monti). In a systematic review of 213 adult neurogenic patients (retrospective, high risk of bias), tube stenosis occurred in 4–32% (median 14%), 85 postoperative events required reoperation, and catheterization ability at last follow-up was at least 84% in every reporting study except one (58.3%).[15]
  4. Bladder-neck reconstruction, sling, AUS, or closure. For intrinsic sphincter deficiency, options include a pediatric bladder-neck sling, AUS in selected older children or adults, or closure with dependable concurrent drainage (for example, an established CIC channel) when outlet leakage is refractory. Use urodynamics to confirm safe capacity, compliance, and storage pressure before raising outlet resistance. For children with a weak sphincter, the 2025 joint guideline weakly favors concurrent augmentation in most cases; plan a catheterizable channel when urethral CIC may be difficult after outlet reconstruction.[32] For adults, AUA/SUFU grades sling Moderate Recommendation/Grade C, AUS Conditional Recommendation/Grade C, and closure Expert Opinion.[22]
  5. MACE (antegrade continence enema) channel. An appendiceal ACE or cecostomy provides antegrade bowel irrigation when transanal irrigation fails or is impractical. When a urinary channel is planned concurrently, allocate the appendix before reconstruction; a divided appendix or a separate bowel conduit can preserve both routes.[32][39]
  6. Ileal conduit or continent diversion. Options include salvage after failed reconstruction or diversion when other bladder-management approaches are inappropriate; for adults with NLUTD, AUA/SUFU recommends offering diversion in either setting .[22] An ileal conduit is appropriate when dependable catheterization is not feasible, whereas continent diversion requires a reliable catheterization and reservoir-care plan.[5][22]

For adults, AUA/SUFU 2021 states that augmentation cystoplasty and continent catheterizable channels may be offered to selected patients (statements 51 and 52, conditional recommendations, Grade C), bladder-neck closure with concomitant drainage may be offered to selected patients with refractory stress urinary incontinence after discussion of risks, benefits and alternatives , urinary diversion should be offered when other options have failed or are inappropriate , and sacral neuromodulation should not be offered to patients with spina bifida or SCI .[22]

Augmentation-cystoplasty specifics in spina bifida​

  • Ileum is the commonest segment; patch detubularized and anastomosed to bivalved bladder.
  • Reoperation is common. In a 413-patient spina bifida augmentation cohort (median follow-up 11 years), 10-year risk of any additional surgery was 44%: bladder stones 28% (recurrence in about half), perforation 9.6% with detubularized reconfigured ileocystoplasty versus 23.7% without, reaugmentation 5.3% versus 15.2%, bowel obstruction 4.5% and conversion to diversion 2.7%.[14] An EAU-cited systematic review of adult neuro-urological bladder augmentation studies reported perforation 1.9%, mucus production 12.5%, metabolic abnormalities 3.35%, bowel dysfunction 15% and stones 10%; the underlying studies were heterogeneous and narratively synthesized.[5] Perforation in adults tracks with missed catheterization and substance use, so screen adherence before offering augmentation.
  • Catheterizable channel planning. A channel may accompany augmentation when urethral CIC is impractical, including for wheelchair users; it can be placed without augmentation when storage is safe, and bladder-neck closure requires another dependable drainage route.[22]
  • Metabolic surveillance. After bowel-segment reconstruction, obtain annual urinary-tract imaging and a basic metabolic panel to assess electrolytes and acid-base status; monitor vitamin B12 when ileum is used.[22][32]
  • Stone surveillance. Bladder stones are the most common complication in augmented patients; among prior stone formers catheterizing through abdominal stomas, daily irrigation of 240 mL or more was associated with fewer recurrent stones and symptomatic UTIs. In a further subgroup with at least two recurrent stones, five-year stone-free rates were similar with irrigation alone, irrigation plus metabolic correction, and irrigation plus a mucolytic agent.[17] In a separate 80-patient spina bifida series after ileocystoplasty with an outlet procedure, 10/32 patients with new renal scarring had clinically silent upper-tract deterioration; continue imaging surveillance even when the patient is well.[17]
  • Malignancy surveillance. Rove et al. cite a 2–4% bladder-cancer risk estimate in a review of published cancer cases.[7] The cases had a median diagnosis age of 41 years, and 71% had stage III–IV disease; the review recommends discussing bladder-cancer risk with all patients with myelomeningocele.[7] Among 52 published myelomeningocele bladder-cancer cases, overall survival differed by augmentation status in unadjusted analysis (P = .009); after eight gastric-augmentation cases were excluded, the comparison of eight augmented and 36 nonaugmented cases was not statistically significant (P = .112).[7] SBA does not recommend a fixed screening cystoscopy schedule; evaluate concerning symptoms.[3][7] AUA/SUFU likewise recommends against screening or surveillance cystoscopy in adults with NLUTD and advises cystoscopy for hematuria, recurrent UTI or suspected anatomic anomaly (statement 18)[40] and after bowel-segment reconstruction with gross hematuria or symptomatic recurrent UTI (statement 60).[22]

Tethered cord​

  • In a child with new urinary or bowel symptoms, reassess neurologic status and bladder and bowel function; when upper- or lower-urinary-tract function changes, obtain total-spine MRI for secondary tethering, assess hydrocephalus, and seek neurosurgical input if tethering is suspected.[32]
  • Untethering can stabilize or improve NLUTD but does not always restore function. In a Japanese MMC series of 55 children, about half (27) needed tethered cord release, usually prompted by worsening video-urodynamics (high pressure, reduced capacity, more DO, reflux); bladder findings improved in 18 of 27 (67%) after release, and routine urodynamics was the main way deterioration was detected.[13]
  • Who develops symptomatic tethering. Essentially all myelomeningocele patients have some post-closure tethering, but in a National Spina Bifida Patient Registry cohort of 6,339 patients, only 21.5% underwent tethered cord release, most (75.8%) just once. The rate did not correlate with functional lesion level; it was lower among non-ambulators than community ambulators and among patients with treated hydrocephalus (HR 0.30), and higher after prior Chiari decompression (HR 1.71). This is a pediatric/adolescent registry population, but the ambulatory, prior-Chiari-decompression phenotype is a reasonable prompt for a lower threshold to re-image an adult transition-clinic patient with new symptoms.[24]
  • Adult-onset tethering, general population. A separate adult neurosurgical series of 24 newly diagnosed tethered-cord patients (age 20–77; mostly taut filum, conus lipoma, or diastematomyelia rather than a prior myelomeningocele closure) found bladder dysfunction in 21, and among the 20 who had surgery, bladder function normalized in 12 and improved in 3; recovery across pain, motor, sensory, and bladder measures was more complete when symptom duration before surgery was under 6 to 8 months.[25]

Transition to Adult Care​

Young adults with spina bifida may experience increased health risks during transition to adult care.[18] Upper-tract and reconstruction surveillance continues across transfer to adult care.[3][18]

Best-practice transition elements:

  • Dedicated spina-bifida multidisciplinary clinics spanning both pediatric and adult populations.
  • Structured transition readiness assessment starting in adolescence.
  • Warm hand-off from pediatric urology to adult neuro-urology.
  • Continued surveillance protocol with no gaps.

The SBA transition guideline (updated 2023) reports that structured transition programs increase the likelihood of establishing with an adult clinic and reduce acute-care use in young adults.[18]

In one questionnaire study of adolescents and young adults with spina bifida and their parents (51 of 93 eligible young people and 69 of 97 parents responded), 95% of young respondents and 59% of parent respondents felt their sexual and reproductive-health knowledge was inadequate; only 39% of young respondents had discussed these topics with a physician, while 93% of young respondents and all parent respondents said they would discuss them if the physician initiated the conversation.[26] Sex counseling has been recommended as part of routine care for adults with spina bifida.[27] Proactively addressing sexuality, contraception, fertility, heredity, and pregnancy is itself a transition-readiness intervention.

Special Adult Reconstructive Issues​

Pregnancy​

  • Before conception, advise women with spina bifida to take folic acid 4 mg daily starting at least one month, preferably three months, before conception through 12 weeks' gestation, and obtain a baseline renal assessment before or early in pregnancy. Most can carry to term with a coordinated urologic-obstetric plan. For lesions above T6, monitor during labor for autonomic dysreflexia and evaluate overlapping symptoms for preeclampsia.[4]
  • As the uterus grows, augmentation or Mitrofanoff anatomy may make catheterization difficult; a urethral catheter may be impossible after bladder-neck closure. In a small retrospective series of women with spinal dysraphism and lower urinary tract reconstruction, 8/15 live-birth pregnancies involved catheterization difficulty and 13/15 involved new or worsening hydronephrosis.[31] Urgently involve urology for drainage difficulty, assess the upper tracts, and tailor temporary bladder drainage to the reconstructed outlet and channel.[4][22][31]
  • Mode of delivery. Plan with a high-risk obstetrician, anesthesiologist, and urologist; vaginal birth remains possible. SBA recommends cesarean after bladder-neck reconstruction or AUS to protect continence. For cesarean after prior lower urinary tract surgery, have a consultant urologist available and anticipate lower-segment adhesions that may require a classical upper-segment uterine incision.[4] In a 15-cesarean retrospective series after lower urinary tract reconstruction, five cystotomies occurred during emergency delivery and three urinary fistulae followed emergency delivery.[31]
  • UTIs are common in pregnancy among women with spina bifida; perform regular urinalysis and urine cultures throughout pregnancy and treat infections promptly.[4] In a Quebec cohort of 397 deliveries to women with spina bifida, maternal ICU admission (PR 3.4) and respiratory morbidity (PR 9.5) were more frequent than in women without spina bifida, so plan delivery at a center able to provide obstetric and critical-care support.[19]

Sexual function and fertility​

  • Men. Erectile dysfunction common; the EAU recommends PDE5i first-line, intracavernous injection second-line and prosthesis only after conservative treatment fails.[5] Ejaculatory dysfunction can be addressed with sympathomimetics for retrograde ejaculation or semen harvest from urine, then vibrostimulation, electroejaculation or surgical sperm retrieval (PESA/TESE) when needed.[5] In a small 1995 cohort of 22 men with myelomeningocele, erection was achieved by visual stimulation in 95% and by tactile stimulation in 86%, yet only 27% of those who achieved erections were satisfied with penile rigidity, and ejaculation with orgasm occurred in 67%.[28] The Spina Bifida Association men's health guideline lists abnormalities of testicular descent, development and function, fertility, penile sensation, and erectile, ejaculatory and orgasmic function as common in men with spina bifida; prostate cancer has been diagnosed in this population, but few data guide screening, diagnosis or treatment.[30]
  • Women. In limited studies summarized by the EAU, sexual dysfunction is common among women with spina bifida; pelvic sensation may be reduced. The EAU strongly recommends against medical therapy for neurogenic sexual dysfunction in women; its strong recommendation for individualized multidisciplinary care concerns fertility, pregnancy, and delivery.[4][5]
  • Latex allergy. Patients with spina bifida are at high risk of latex sensitization from repeated early exposure, and the SBA guidelines call for lifelong evidence-based latex allergy management.[20] Latex sensitization was 4.5% (1/22) among children managed in a latex-free environment from birth versus 27% (4/15) in historic controls in one series, so use latex-free gloves, catheters and equipment from the first procedure and always confirm status preoperatively.[21] The EAU also prefers silicone catheters for this reason.[5]

Bladder cancer in augmented spina bifida​

  • Among 52 published myelomeningocele bladder-cancer cases in a systematic review, median age at diagnosis was 41 years and 37 (71%) presented at stage III–IV; cases occurred with or without augmentation.[7]
  • Obtain cystoscopy and upper-tract evaluation for relevant changes, including gross hematuria, recurrent symptomatic UTI, increasing incontinence or pelvic pain; do not substitute a routine screening timetable for symptom assessment.[3]

Pelvic organ and rectal prolapse​

  • A retrospective comparison in adults with spina bifida and an acontractile detrusor found an association between Valsalva voiding and rectal prolapse or intussusception.[23] A retrospective comparison of 55 adults with spina bifida and neurogenic acontractile detrusor (28 voiding by Valsalva, 27 on CIC) found de novo or worsened rectal prolapse/intussusception in 32.1% of Valsalva voiders versus 3.7% of CIC users over a median follow-up of 80.6 and 65.6 months, respectively (P = .01); de novo or worsened vaginal prolapse was also more frequent with Valsalva voiding (33.3% vs 11.1%) but did not reach significance.[23]
  • Examine women for pelvic organ prolapse and both sexes for rectal prolapse or intussusception at follow-up visits, with a lower threshold in patients who empty by Valsalva rather than CIC.

Obesity and reconstruction access​

  • For wheelchair users whose body habitus impedes urethral CIC, a catheterizable abdominal stoma may facilitate access; select a site reachable from the usual seated position, including the upper abdomen when obesity or scoliosis makes this necessary.[36]

Clinical Correlations for the Reconstructive Urologist​

  • Urodynamics drive NLUTD decisions, not lesion level. Two infants with the "same" MMC level can have opposite phenotypes.
  • Hostile bladder: early CIC and antimuscarinic. Early pressure management and reliable surveillance reduce preventable upper-tract injury.
  • Match reconstruction to the functional problem. Augmentation addresses unsafe storage, a catheterizable urinary channel addresses difficult urethral CIC, and MACE addresses bowel management when less invasive irrigation is insufficient or impractical; they can be combined when indications coexist.[32]
  • Protect surveillance during transition. Assign adult-care responsibility for renal imaging, kidney-function review, catheterization support and reconstruction follow-up; structured transition initiatives are associated with better adult-care engagement and less acute-care use.[3][18]
  • Investigate new functional decline. Reassess bladder and bowel function, neurologic status and hydrocephalus; obtain spine MRI when upper- or lower-tract function changes to evaluate secondary tethering.[32]
  • Latex allergy is a surgical hazard. Always flagged preoperatively.
  • Coordinate spina-bifida follow-up. Connect patients seen sporadically to a named program that coordinates urology, neurosurgery, orthopedics, rehabilitation, gastroenterology and gynecology when one is available; otherwise arrange a primary-care or physiatry medical home to coordinate adult care.[18]

See Also​

Videos​

Reconstruction in Neurogenic Bladder
PedsUroFLO lecture (2020)

References​

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3. Spina Bifida Association. Urology Guideline. May 2023 guidance, current SBA publication. Accessed September 11, 2026.

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