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PubMed This is a summary of 23 peer-reviewed journal articles Updated
Neurosurgery · Spina Bifida

The Long-Term Journey: Lifelong Management of Spina Bifida

At a Glance

Lifelong spina bifida management requires a multidisciplinary approach focusing on neurosurgical monitoring, bladder and bowel care to protect kidneys, and optimizing mobility. Care evolves over time, shifting from pediatric support to patient self-management in adulthood.

After the initial surgeries of infancy, the focus of care shifts to long-term health, independence, and quality of life. For children with spina bifida, management is an ongoing journey rather than a single event. With a proactive multidisciplinary team, many individuals grow up to lead active, fulfilling, and independent lives [1][2].

Neurosurgical Monitoring: Protecting the Brain and Spine

Even after a successful initial repair, the nervous system requires lifelong monitoring. Two primary conditions are watched closely:

  • Shunt Management: If your child has a shunt to manage hydrocephalus (fluid in the brain), it must be checked regularly [3]. A shunt malfunction or infection is a serious event that requires immediate medical attention [4]. Some children may be candidates for an Endoscopic Third Ventriculostomy (ETV), an alternative surgery that creates a natural bypass for the fluid without needing a shunt [5].
  • Tethered Cord Syndrome: As a child grows, the spinal cord can sometimes become “stuck” or “tethered” to the scar tissue from the original repair [6]. This can pull on the cord, causing new symptoms like leg weakness, changes in bladder control, or back pain [6][7].

Urology and Bowel: The Path to “Social Continence”

Managing the bladder and bowel is often the most critical factor in a child’s long-term Health-Related Quality of Life (HRQoL) [8][9]. Because the nerves to these organs are affected, most children have neurogenic bladder and bowel [8].

  • Bladder Health: The primary goal is to protect the kidneys from high pressure or infection [10]. This is often done through Clean Intermittent Catheterization (CIC), which uses a small tube to empty the bladder several times a day [11][12]. In some cases, Botox injections are used to relax the bladder muscle, helping it hold more urine at a lower pressure, further protecting the kidneys [13].
  • Social Continence: As children reach school age, the goal shifts toward staying dry and clean during the day [14]. This may involve medications, specialized diets, or surgical procedures like the Mitrofanoff (a channel for catheterizing through the belly button) or the MACE (a procedure to help empty the bowels) [15][16].

Mobility and Orthopedics

A child’s ability to move is closely linked to their lesion level [17]. Orthopedic care focuses on keeping the body in alignment to allow for the best possible mobility.

  • Bracing and Equipment: Many children use AFOs (ankle-foot orthotics) or higher leg braces to help them stand and walk [18][19].
  • Wheelchairs: For children with higher-level lesions, a wheelchair is an essential tool for speed, safety, and independence, allowing them to participate fully in school and social activities [18].

The Transition to Adulthood

One of the most important phases of care is the move from pediatric to adult medicine [20].

  • Self-Management: Starting in the pre-teen years, clinics often use tools like the Transition Readiness Assessment Questionnaire (TRAQ) to help children learn to manage their own catheterization, skin checks, and medications [1][21].
  • Lifelong Care: Adults with spina bifida need a dedicated team that understands the unique risks of the condition, including skin breakdown, renal (kidney) health, and mental health support for anxiety or depression [22][23].
Goal Area Common Interventions Long-Term Focus
Brain/Spine Shunts, ETV surgery Monitoring for malfunction or tethering [4][6]
Bladder Catheterization (CIC), Botox Protecting kidney function; social dryness [11][13]
Bowel Irrigation, MACE procedure Predictable, clean bowel movements [16]
Mobility Braces, Physical Therapy Maintaining independence and bone health [18]
Skin Regular “skin checks” Preventing pressure sores in areas with no feeling [22]

Common questions in this guide

What are the signs of tethered cord syndrome in spina bifida?
Symptoms of a tethered cord can include new leg weakness, unexpected changes in bladder or bowel control, and back pain. Because the spinal cord becomes stuck to scar tissue from the original repair, these symptoms require prompt evaluation by a neurosurgeon.
How is neurogenic bladder managed in children with spina bifida?
Bladder management focuses on protecting the kidneys from high pressure and infection while helping the child stay dry. This is commonly achieved through Clean Intermittent Catheterization (CIC) to empty the bladder, sometimes paired with Botox injections to relax the bladder muscle.
What is social continence and how is it achieved?
Social continence refers to the goal of a child staying clean and dry during the day, which becomes especially important as they reach school age. It is typically managed through specialized diets, catheterization routines, or surgical procedures like the Mitrofanoff or MACE.
What equipment helps children with spina bifida with mobility?
Mobility depends largely on the level of the spinal lesion. Many children use ankle-foot orthotics (AFOs) or higher leg braces to support standing and walking, while others rely on wheelchairs to maximize their independence, speed, and safety in daily activities.
How do patients transition from pediatric to adult spina bifida care?
The transition begins in the pre-teen years by teaching the child to manage their own care, such as catheterization, skin checks, and taking medications. Clinics often use readiness assessments to ensure a smooth handoff to an adult medical team that understands spina bifida.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What are the specific 'red flag' symptoms for shunt malfunction or tethered cord that I should look for at each age?
  2. 2.When should we schedule our first urodynamic study to assess bladder pressure and kidney safety?
  3. 3.What are the realistic goals for my child's mobility, and what equipment (braces, walkers, wheelchairs) might be needed?
  4. 4.How does your clinic support the 'social continence' goals for bowel and bladder as my child reaches school age?
  5. 5.What is your center's process for transitioning patients from pediatric to adult care?

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 (23)
  1. 1

    The reliability and validity of a newly developed spina bifida-specific Transition Readiness Assessment Questionnaire: Transition Readiness Assessment Questionnaire-supplement (TRAQ-SB).

    Johnson K, Rocque B, Hopson B, et al.

    Journal of pediatric rehabilitation medicine 2019; (12(4)):415-422 doi:10.3233/PRM-180599.

    PMID: 31744033
  2. 2

    Changes and Needs Experienced by People Aging With Spina Bifida and Hydrocephalus.

    Gattaz L, Ouellet MC, Turcotte S, et al.

    The Gerontologist 2025; (65(6)) doi:10.1093/geront/gnaf101.

    PMID: 40227013
  3. 3

    Hydrocephalus in Spina Bifida.

    Blount JP, Maleknia P, Hopson BD, et al.

    Neurology India 2021; (69(Supplement)):S367-S371 doi:10.4103/0028-3886.332247.

    PMID: 35102990
  4. 4

    Co-morbidities Associated With Early Mortality in Adults With Spina Bifida.

    Dicianno BE, Sherman A, Roehmer C, Zigler CK

    American journal of physical medicine & rehabilitation 2018; (97(12)):861-865 doi:10.1097/PHM.0000000000000964.

    PMID: 29757766
  5. 5

    Administration of prosaposin-derived neurotrophic factor to neural tube defects facilitates regeneration and restores neurological functions.

    Khan S, Takeuchi A, Nabeka H, et al.

    iScience 2023; (26(4)):106277 doi:10.1016/j.isci.2023.106277.

    PMID: 37153447
  6. 6

    Tethered cord syndrome with spina bifida aperta in cats: two case reports of different types.

    Tamura M, Oji T, Une S, et al.

    JFMS open reports 2017; (3(1)):2055116917708060 doi:10.1177/2055116917708060.

    PMID: 28546867
  7. 7

    What has changed in pediatric neurosurgical care in spina bifida? A 30-year UAB/Children's of Alabama observational overview.

    Blount JP, Hopson BD, Johnston JM, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2023; (39(7)):1791-1804 doi:10.1007/s00381-023-05938-9.

    PMID: 37233768
  8. 8

    Multidisciplinary management of people with spina bifida across the lifespan.

    Koch VH, Lopes M, Furusawa E, et al.

    Pediatric nephrology (Berlin, Germany) 2024; (39(3)):681-697 doi:10.1007/s00467-023-06067-w.

    PMID: 37501019
  9. 9

    All Incontinence is Not Created Equal: Impact of Urinary and Fecal Incontinence on Quality of Life in Adults with Spina Bifida.

    Szymanski KM, Cain MP, Whittam B, et al.

    The Journal of urology 2017; (197(3 Pt 2)):885-891 doi:10.1016/j.juro.2016.08.117.

    PMID: 28131501
  10. 10

    Usefulness of videourodynamic study in the decision-making of surgical intervention and bladder management for neurogenic lower urinary tract dysfunction among patients with myelomeningocele.

    Yu WR, Kuo HC

    International urology and nephrology 2022; (54(8)):1815-1824 doi:10.1007/s11255-022-03236-y.

    PMID: 35608803
  11. 11

    Influence in the outcome of neuropathic pediatric patients after early treatment.

    Burgos Lucena L, López Pereira P, Martínez Urrutia MJ, et al.

    Actas urologicas espanolas 2022; (46(1)):28-34 doi:10.1016/j.acuroe.2021.01.012.

    PMID: 34844901
  12. 12

    Influence in the outcome of neuropathic pediatric patients after early treatment.

    Burgos Lucena L, López Pereira P, Martínez Urrutia MJ, et al.

    Actas urologicas espanolas 2021; doi:10.1016/j.acuro.2021.01.005.

    PMID: 34563387
  13. 13

    AbobotulinumtoxinA is effective in patients with urinary incontinence due to neurogenic detrusor overactivity regardless of spinal cord injury or multiple sclerosis etiology: Pooled analysis of two phase III randomized studies (CONTENT1 and CONTENT2).

    Denys P, Castaño Botero JC, Vita Nunes RL, et al.

    Neurourology and urodynamics 2023; (42(1)):153-167 doi:10.1002/nau.25062.

    PMID: 36321799
  14. 14

    Evaluating Decisional Regret in Adults With Spina Bifida Regarding Childhood Surgeries for Neurogenic Bladder and Bowel.

    Batra NV, Johnston AW, Cain MP, et al.

    The Journal of urology 2025; (214(4)):426-434 doi:10.1097/JU.0000000000004643.

    PMID: 40526451
  15. 15

    Utility of Mitrofanoff as bladder draining tool: A single center experience in pediatric patients.

    Iqbal N, Syed OZ, Bukhari AH, et al.

    Turkish journal of urology 2019; (45(1)):42-47 doi:10.5152/tud.2018.86836.

    PMID: 30484768
  16. 16

    Continent Cutaneous Catheterizable Channels in Pediatric Patients: A Decade of Experience with Open and Robotic Approaches in a Single Center.

    Galansky L, Andolfi C, Adamic B, Gundeti MS

    European urology 2021; (79(6)):866-878 doi:10.1016/j.eururo.2020.08.013.

    PMID: 32868139
  17. 17

    Spina Bifida: Pathogenesis, Mechanisms, and Genes in Mice and Humans.

    Mohd-Zin SW, Marwan AI, Abou Chaar MK, et al.

    Scientifica 2017; (2017()):5364827 doi:10.1155/2017/5364827.

    PMID: 28286691
  18. 18

    Factors Associated with Mobility Outcomes in a National Spina Bifida Patient Registry.

    Dicianno BE, Karmarkar A, Houtrow A, et al.

    American journal of physical medicine & rehabilitation 2015; (94(12)):1015-25 doi:10.1097/PHM.0000000000000404.

    PMID: 26488146
  19. 19

    Correlation Between Neurologic Impairment Grade and Ambulation Status in the Adult Spina Bifida Population.

    Tita AC, Frampton JR, Roehmer C, et al.

    American journal of physical medicine & rehabilitation 2019; (98(12)):1045-1050 doi:10.1097/PHM.0000000000001188.

    PMID: 30932916
  20. 20

    2023 updates to the spina bifida transition to adult care guidelines.

    Fremion E, Kaufman M, Mukherjee S, et al.

    Journal of pediatric rehabilitation medicine 2023; (16(4)):583-593 doi:10.3233/PRM-230052.

    PMID: 38160373
  21. 21

    Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida.

    Wood D, Rocque B, Hopson B, et al.

    Journal of pediatric rehabilitation medicine 2019; (12(4)):405-413 doi:10.3233/PRM-180595.

    PMID: 31744032
  22. 22

    Team Approach: Guideline-Based Management of Skin Injury in Individuals with Myelomeningocele.

    Bradko V, Hill J, Castillo H, Castillo J

    JBJS reviews 2019; (7(3)):e1 doi:10.2106/JBJS.RVW.18.00062.

    PMID: 30844844
  23. 23

    Health-related quality of life in non-paraplegic (ambulatory) children with myelomeningocele.

    Canaz H, Canaz G, Dogan I, Alatas I

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2017; (33(11)):1997-2002 doi:10.1007/s00381-017-3494-y.

    PMID: 28656385

This page provides educational information on the long-term management of spina bifida. Always consult your multidisciplinary healthcare team for personalized medical advice, equipment needs, and treatment plans.

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