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PubMed This is a summary of 21 peer-reviewed journal articles Updated
Orthopedics

Mobility, Orthopedics, and Skin Care

At a Glance

Spina bifida mobility depends on actual muscle strength, joint tightness, and orthopedic problems—not spinal imaging alone. Consistent brace use, daily skin checks, pressure relief, and latex precautions support comfort, independence, and safety.

Living with spina bifida involves a proactive approach to physical health. Because the condition affects the nerves that control muscles and provide sensation, mobility, bone health, and skin protection are all interconnected. Managing these areas is not about reaching a single milestone, but about maintaining independence and comfort throughout life [1][2].

Mobility and the “Lesion Level”

The location of the spinal opening, known as the lesion level, is a key factor in predicting mobility. Generally, a “lower” lesion (closer to the tailbone) means more leg muscles are under your control [1][3].

  • Sacral or Low-Lumbar: Many individuals with these levels walk independently or with minor aids like ankle braces [1][4].
  • Mid-to-High Lumbar: Walking often requires crutches or walkers, and a wheelchair may be used for longer distances [4][5].
  • Thoracic (Chest level): Mobility usually relies primarily on a wheelchair [1][6].

It is important to remember that the level seen on an X-ray doesn’t always tell the whole story. Real-world strength (functional motor level), hip and knee contractures, hydrocephalus, and orthopedic deformities are better predictors of walking than imaging alone [6][5]. Wheelchair use can be an efficient and positive mobility choice, and should not be viewed as a failure of independence.

Orthopedic Care: Feet and Spine

Because some muscles are stronger than others, the pull on bones can be uneven, leading to common orthopedic issues.

Clubfoot (Talipes Equinovarus)

Many babies with spina bifida are born with clubfoot, where the foot turns inward and downward.

  • Treatment: The Ponseti method is the standard approach, using a series of gentle stretches and plaster casts to move the foot into the correct position [7][8].
  • Maintenance: After casting, a brace is worn to keep the foot in place. In spina bifida, clubfoot has a higher “relapse” rate (coming back) compared to other cases, so staying consistent with the brace and follow-up appointments is essential [9][10].

Scoliosis

Scoliosis, or a curve in the spine, is common, especially as children grow [11]. It is measured by the Cobb angle (the degree of the spinal curve).

  • Management: Bracing can sometimes slow the curve, but it does not always prevent the need for surgery [12].
  • Surgery: If a curve becomes severe enough to interfere with sitting or breathing, spinal fusion surgery may be considered [13][14]. However, this surgery carries a high risk of complications, such as infections or wounds that are slow to heal [15][16]. Discussing the functional goals—like being able to sit more comfortably—is more important than just “straightening” the spine [17].

Skin Care: Preventing Pressure Ulcers

Because you may have limited or no feeling in parts of your body, you cannot rely on pain to tell you when a shoe is too tight or when you’ve been sitting too long. This puts you at risk for pressure ulcers (sores) [2][18].

  • Daily Skin Checks: Use a mirror or have a caregiver check your heels, backside, and under braces every night for redness that does not fade [2][19]. On darker skin tones, pressure injuries may not look red; look for areas that are warm, firm, swollen, or have a purple discoloration.
  • The 15-Minute Rule: This is a common starting point: if you see a red spot after taking off a brace or shoe, it should disappear within 15 to 20 minutes. If it stays red, do not wear that item and contact your orthotist for an adjustment [20].
  • Pressure Relief: If you use a wheelchair, a common starting interval is performing “pressure reliefs” (lifting yourself or tilting your chair) every 15–30 minutes, though this should be individually assessed by a seating specialist [2]. Off-load pressure immediately for any concerning changes, and seek clinical assessment for persistent discoloration, blisters, or broken skin.

Latex Precautions and Allergy Planning

Individuals with spina bifida are at an increased risk for latex sensitization, likely due to frequent exposure to latex during many early surgeries and medical procedures [21].

  • Hidden Sources: Latex can be found in everyday items like party balloons, rubber gloves, elastic waistbands, erasers, and some medical catheters or dental equipment [21].
  • Precaution: Document latex precautions in medical and school records. Always tell healthcare providers and dentists about this risk before an appointment. Even if you have never had a reaction, the allergy can develop suddenly at any time.
  • Anaphylaxis Action: If exposure leads to hives, facial/throat swelling, wheezing, faintness, or breathing trouble, use prescribed epinephrine immediately and call emergency services (911) [21].

Common questions in this guide

How does the lesion level affect mobility in spina bifida?
A lower sacral or low-lumbar lesion often leaves more leg muscle control, so some people walk independently or with ankle braces. Mid- to high-lumbar lesions may require crutches, walkers, or a wheelchair for distance, while thoracic lesions commonly rely primarily on a wheelchair. Actual strength, joint contractures, hydrocephalus, and orthopedic deformities may predict walking better than an X-ray level alone.
What treatment is used for clubfoot in spina bifida?
Clubfoot is commonly treated with the Ponseti method, which uses gentle stretches and a series of casts followed by bracing. Because clubfoot can relapse more often in spina bifida, consistent brace use and follow-up appointments are important.
When is scoliosis surgery considered in spina bifida?
Bracing may slow scoliosis, but it may not prevent surgery. Spinal fusion may be considered when the curve becomes severe enough to interfere with sitting or breathing. The decision should focus on functional goals and include discussion of wound-healing and infection risks.
How can I prevent pressure sores when sensation is reduced?
Check the skin every day, especially the heels, backside, and under brace straps, using a mirror or caregiver if needed. Redness after removing a shoe or brace should fade within 15 to 20 minutes; if it persists, stop using the item and contact an orthotist. Wheelchair users often begin pressure relief every 15 to 30 minutes, but a seating specialist should tailor the schedule. Off-load pressure immediately and seek clinical assessment for persistent discoloration, blisters, or broken skin.
Why are latex precautions important for people with spina bifida?
People with spina bifida have a higher risk of latex sensitization, possibly because of frequent latex exposure during early surgeries and medical procedures. Latex may be hidden in balloons, rubber gloves, elastic items, some catheters, and dental equipment, so tell healthcare and dental providers in advance and document precautions. If exposure causes hives, facial or throat swelling, wheezing, faintness, or trouble breathing, use prescribed epinephrine immediately and call 911.
Is using a wheelchair a failure to walk independently with spina bifida?
No. A wheelchair can be an efficient and positive way to move, especially for longer distances or when walking requires significant effort. Mobility goals should focus on independence, safety, comfort, and daily activities rather than on walking alone.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What is my child's (or my) functional motor level, and how does that typically correspond to mobility goals like walking or using a wheelchair?
  2. 2.Are there any signs of foot deformity or skin redness that suggest we need to adjust our current orthotics (braces)?
  3. 3.If scoliosis is present, what is the 'Cobb angle' and is it progressing fast enough to consider a brace or surgery?
  4. 4.What are the specific risks of scoliosis surgery in our case, particularly regarding wound healing and infection?
  5. 5.How can we formally document latex precautions in medical and school records?

Questions For You

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References

References (21)
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    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
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    Integument: Guidelines for the care of people with spina bifida.

    Beierwaltes P, Munoz S, Wilhelmy J

    Journal of pediatric rehabilitation medicine 2020; (13(4)):543-548 doi:10.3233/PRM-200723.

    PMID: 33252092
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    Factors Associated With Ambulation and Transfer Ability: A Study From the National Spina Bifida Patient Registry.

    Benjamin NL, McKernan G, Izzo S, et al.

    American journal of physical medicine & rehabilitation 2022; (101(7)):652-658 doi:10.1097/PHM.0000000000001879.

    PMID: 34508059
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    Six-minute walk test reference values in ambulatory children with myelomeningocele.

    Zapata KA, Cooksey RH, Fulton DK, et al.

    Developmental medicine and child neurology 2026; (68(1)):110-117 doi:10.1111/dmcn.16397.

    PMID: 40556501
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    The Relationship Between Lower Limb Muscle Strength and Gross Motor Skills Including Ambulation in Children with Spina Bifida.

    Thomas NM, George JM, Ware RS, et al.

    Physical & occupational therapy in pediatrics 2026; (46(2)):269-286 doi:10.1080/01942638.2025.2560984.

    PMID: 40981495
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    Relationships among classifications of impairment and measures of ambulatory function for children with spina bifida.

    Rethlefsen SA, Bent MA, Mueske NM, Wren TAL

    Disability and rehabilitation 2021; (43(25)):3696-3700 doi:10.1080/09638288.2020.1746845.

    PMID: 32255380
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    Effectiveness of the Ponseti method for treating clubfoot associated with myelomeningocele: 3-9 years follow-up.

    Matar HE, Beirne P, Garg NK

    Journal of pediatric orthopedics. Part B 2017; (26(2)):133-136 doi:10.1097/BPB.0000000000000352.

    PMID: 27386794
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    Midterm Results of the Ponseti Method for Treatment of Clubfoot in Patients With Spina Bifida.

    Arkin C, Ihnow S, Dias L, Swaroop VT

    Journal of pediatric orthopedics 2018; (38(10)):e588-e592 doi:10.1097/BPO.0000000000001248.

    PMID: 30199458
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    Outcomes of Ponseti Method for the Treatment of Clubfeet in Children With Spina Bifida.

    Schaibley C, Torres-Izquierdo B, Meyer Z, Hosseinzadeh P

    Journal of pediatric orthopedics 2024; (44(9)):539-544 doi:10.1097/BPO.0000000000002745.

    PMID: 38934642
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    Management of idiopathic clubfoot: an umbrella review and CPAM-LRC consensus: Limb Reconstruction Committee of Orthopedics Branch of China International Exchange and Promotion Association for Medical and Health Care (CPAM-LRC).

    Zhao F, Wu T, Kang Q, et al.

    Journal of orthopaedic surgery and research 2025; (20(1)):1103 doi:10.1186/s13018-025-06459-8.

    PMID: 41291730
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    Prevalence and risk factors for scoliosis in adults with closed and open spina bifida: A large, cross-sectional study.

    Cacioppo M, Menard H, Olivari Philiponnet C, et al.

    Annals of physical and rehabilitation medicine 2023; (66(2)):101685 doi:10.1016/j.rehab.2022.101685.

    PMID: 35717001
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    Follow-up of brace-treated scoliosis in children with cerebral palsy and spina bifida.

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    Journal of pediatric rehabilitation medicine 2022; (15(4)):607-614 doi:10.3233/PRM-210102.

    PMID: 36442215
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    The surgical treatment of spinal deformity in children with non-ambulatory myelomeningocele.

    Tsirikos AI, Wordie SJ

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    PMID: 34058879
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    Team Approach: The Management of Adolescents and Adults with Scoliosis and Spina Bifida.

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    Complications and outcomes of spinal deformity correction in patient with open neural tube defects.

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    Surgical management of scoliotic deformities related to spina bifida: complication rates, radiographic parameters, and quality of life.

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    What is the Role of Scoliosis Surgery in Adolescents and Adults with Myelomeningocele? A Systematic Review.

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  19. 19

    The prevalence and risk factors for foot pressure ulcers in ambulatory pediatric patients with spina bifida.

    Rethlefsen S, Mueske N, Wren T, et al.

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  20. 20

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    Latex allergy guidelines for people with spina bifida.

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    Journal of pediatric rehabilitation medicine 2020; (13(4)):601-609 doi:10.3233/PRM-200741.

    PMID: 33285646

This page provides general information about mobility, orthopedic care, skin protection, and latex precautions in spina bifida; it does not replace medical advice. Ask your spina bifida care team for an individualized mobility, brace, skin, or allergy plan.

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