Introduction

Spina Bifida (SB) is a condition present at birth that occurs when the neural tube, which develops into the brain and spinal cord, does not close completely during early pregnancy. SB is estimated to be prevalent in 1 out of 2,587 births (Centers for Disease Control and Prevention, 2026). Spina bifida is associated with a combination of genetic and environmental factors, including insufficient folic acid during early pregnancy. Other nutritional factors may also play a role, although their contributions are less clearly established.

Depending on the level and extent of nerve involvement, individuals with spina bifida may experience weakness or changes in sensation in areas controlled by the affected nerves, including the abdomen and legs, as well as difficulties with bowel and bladder function.

There are three primary classifications of SB:

• SB occulta
• Meningocele
• Myelomeningocele (also termed spina bifida cystica or meningomyelocele)

Many individuals with myelomeningocele, the most severe open form of SB, develop hydrocephalus and may require a shunt to drain excess cerebrospinal fluid from the brain’s ventricles. The location of SB may be cervical (neck), thoracic (chest), lumbar (lower back), or sacral (base of the spine).

SB occulta encompasses a group of conditions affecting the spinal cord, in which the nerves are usually intact. SB occulta is characterized by an aperture in the spine that is covered by a layer of skin. SB occulta is a mild form of SB that rarely results in disability or symptoms.

Meningocele is characterized by a protruding sac filled with cerebrospinal fluid that extends through an opening in the spine. Although the spinal nerves are usually intact, some individuals may experience functional effects, such as changes in sensation, muscle weakness, or difficulties with bladder or bowel function. However, these effects are not present in everyone, and some individuals may have few or no noticeable functional limitations.

Myelomeningocele occurs when parts of the spinal cord, combined with innervating nerves, protrude through an opening of the spine. This may result in complete or partial paralysis below the location of the protrusion. This form of SB typically results in nerve damage and other forms of disabilities, making it the most severe form of SB. It is common for spinal fluid drainage to be compromised in myelomeningocele, which may lead to excessive fluid accumulation in the head and cause damage to the brain.

Importance of Exercise

Research has shown that people with disabilities tend to engage in less physical activity than their nondisabled peers, potentially increasing their risk for cardiometabolic disease (Rimmer et al., 2012). Studies of individuals with spina bifida have also reported higher body fat, reduced aerobic capacity, lower walking endurance, and reduced muscular strength compared with individuals without spina bifida, although these findings may vary by individual and the populations studied (Liusuwan et al., 2007; Schoenmakers et al., 2009).

People with spina bifida (SB) should be encouraged to participate in physical activity, recreation, and sports from an early age to help establish lifelong activity habits and support physical function and overall well-being. Participation in group exercise programs, inclusive recreation, and adapted or unified sports may also promote social participation and psychosocial health. Research suggests that structured physical activity can improve walking performance and aspects of aerobic fitness in some children with SB (Danielsson et al., 2011). Additionally, among adolescents and young adults with myelomeningocele, higher levels of physical activity and fitness have been associated with fewer difficulties participating in daily activities and higher physical health-related quality of life (Buffart et al., 2009)

Although the benefits of physical activity are well recognized, additional research is needed to determine the optimal frequency, intensity, duration, and type of exercise for people with SB, particularly across different ages and functional abilities. The Spina Bifida Association recommends following national physical activity guidelines as closely as possible unless a healthcare provider determines that specific activities are medically unsafe. For children ages 6–17, recommendations include at least 60 minutes of physical activity daily, with aerobic, muscle-strengthening, and bone-strengthening activities incorporated throughout the week. For adults, recommendations include at least 150 minutes of moderate-intensity aerobic activity per week, or 75 minutes of vigorous-intensity activity, or an equivalent combination, along with muscle-strengthening activities on at least two days per week. Some physical activity is better than none, and activity goals should be individualized to support safe and meaningful participation.

Exercise programs should incorporate an appropriate progression of cardiovascular fitness, muscular strength, and flexibility, with adaptations based on each person’s mobility, sensation, medical history, and functional goals. Healthcare providers, physical and occupational therapists, and other relevant professionals can help identify appropriate activities, address barriers to participation, and ensure that mobility equipment fits properly. Additional considerations may include shunt-related precautions, ambulatory limitations, skin protection, bowel and bladder care, and access to inclusive physical activity opportunities.

Potential benefits of regular physical activity include:

• Helping maintain physical function, muscular strength, and endurance.
• Supporting healthy weight management and cardiovascular health.
• Supporting psychological well-being, including mood and stress management.
• Promoting participation in daily activities, recreation, and community life.
• Potentially reducing the risk of certain chronic health conditions, although the evidence for preventing specific secondary conditions in people with SB remains limited.

Important Considerations When Exercising

• Always maintain proper posture.
• Many people with spina bifida have a latex allergy. If this is the case, always check beforehand to make sure that the exercise equipment is not made of latex. Latex-free versions of elastic resistance bands and other exercise products are available.
• Incontinence (flaccid or neurogenic bowel/bladder) – Individuals may experience a loss of control with their bowel or bladder. KEY: Monitor urinary cycle; be sure to empty your bowel and bladder before starting exercise.
• For individuals with a shunt, discuss any activity-specific precautions with their healthcare team and seek medical evaluation for new neurological symptoms (Spina Bifida Association [SBA], 2025a; Centers for Disease Control and Prevention [CDC], 2026). Take precautions to avoid excessive impact or trauma to the shunt and its tubing
• Thermoregulation – Irregular body temperatures are often experienced by individuals with SB. KEY: Wear appropriate clothing, drink plenty of fluids and take precautions in certain environments; in warm environments, a fan and water spray will aid in cooling, and in cold environments, wear extra layers.
• Because reduced sensation can affect the ability to detect heat, pressure, and friction, inspect the skin before and after exercise, check braces and equipment for proper fit, wear protective footwear over areas with reduced sensation, and avoid hot surfaces that could cause burns (SBA, 2025c).
• Pressure sores (decubitus ulcers) – Damage to the skin or underlying tissue caused by prolonged sitting, using old wheelchair cushions, sitting on hard surfaces, shear forces or as a result of a fall. KEY: Check skin regularly and perform regular wheelchair push-ups, or have the individual reposition him/herself regularly, especially when engaged in wheelchair sports. (See strength training section for protocol)
• Fractures – People with SB may also have an increased risk of fractures related to bone health and mobility; activities should be selected and adapted to individual needs, with guidance from healthcare professionals when fracture risk is a concern (SBA, 2025d).
• Transfers – When applicable, wheelchair users need to know how to transfer him-/herself safely from the wheelchair to an accessible exercise machine. People who provide assistance to wheelchair users should be trained to follow the appropriate guidelines for safe transfers.
  • Model Systems Knowledge Translation Center Safe Wheelchair Transfer Training – https://msktc.org/sci/online-course/safe-wheelchair-transfer-training
  • Family Caregiver Alliance Transferring A Person
• Balance – Use straps or other physical assistance to hold the trunk in position during upright exercise.
• Swelling – If during exercise, foot and leg swelling occurs, resolve with leg elevation. If swelling is persistent, the individual should discuss this with his/her doctor. Compression stockings may also be helpful for some individuals to keep swelling down. However, individuals should consult a healthcare provider before using compression garments to determine whether they are appropriate and to ensure proper fit and compression.
• Spasticity – This condition is characterized by increased muscle tone and exaggerated stretch reflexes. It typically affects muscles below the level of spinal cord involvement. Spasticity may be triggered or worsened by exposure to cold, urinary tract infections (UTIs), and physical activity. Individuals should consult a healthcare provider or physical therapist about strategies to manage spasticity that interferes with movement or daily activities. KEY: You should stretch spastic muscle groups and avoid exercises that cause excessive spasticity. When you are at home, you should extend your legs as often as possible. Discuss ways to reduce muscle spasticity that interferes with activity with your doctor or physical therapist.

Important Safety Considerations

• Inform your physician that you are starting a regular exercise program.
• Start slowly, beginning with only a few sets and/ or repetitions, or with lesser resistance/ weight. Then gradually build these elements up as you go.
• Warm up for approximately 10 minutes before starting your exercises, and cool down after your exercise session.
• Regularly monitor blood pressure, heart rate, and rate of perceived exertion (RPE).
• Stop exercising if you feel pain or discomfort.
• Don’t exercise if you are ill (i.e., cold, flu, bladder infection, pressure ulcer, unusual spasticity).
• Check medications and their effect on exercise tolerance.
• Extended periods of inactivity may cause osteoporosis.

Cardiovascular Training Guidelines

• Importance of aerobic exercise: Aerobic physical activity can help improve or maintain cardiorespiratory fitness, endurance, and overall health. Individuals with SB should be encouraged to participate in physical activity suited to their abilities, interests, and health needs.
• Exercise duration and frequency: Physical activity goals should follow age-appropriate national recommendations. Adults should aim for at least 150 minutes of moderate-intensity aerobic activity per week, or 75 minutes of vigorous-intensity activity, or an equivalent combination. Children and adolescents ages 6–17 should aim for at least 60 minutes of physical activity daily. Activity can be accumulated throughout the day, and some activity is better than none.
• Monitoring exercise intensity: Exercise intensity can be monitored using rating of perceived exertion (RPE), heart rate, and the individual’s ability to talk during activity. Heart-rate responses may vary among individuals with SB, so age-predicted maximum heart-rate formulas may not always provide an accurate measure of exercise intensity. Monitoring methods should be selected according to the individual’s needs and, when appropriate, with guidance from a healthcare or exercise professional.
• Types of cardiovascular exercise: Depending on an individual’s mobility, strength, sensation, and preferences, appropriate activities may include arm cycling, upper-body aerobic exercise, rowing, swimming, wheelchair propulsion, adapted sports, and walking or cycling when feasible. Exercise equipment and activities should be adapted as needed to promote safety, comfort, and participation.
• Individualization and safety: Begin at a manageable intensity and progress gradually. Consider factors such as skin protection, mobility equipment, balance, joint health, and any medical precautions. A healthcare professional or qualified exercise professional can help determine appropriate activities and modifications.

Strength Training Guidelines

• Strengthening exercises: Strength-training programs should target muscle groups relevant to an individual’s functional abilities and goals. Begin with manageable resistance and gradually increase it as strength and tolerance improve. A qualified exercise professional or physical therapist can help develop an appropriate program.
• Frequency: Adults should aim to perform muscle-strengthening activities involving all major muscle groups on at least two days per week. Children and adolescents ages 6–17 should incorporate muscle-strengthening activities at least three days per week, as appropriate for their abilities and needs.
• Recovery: Allow adequate recovery between sessions that work the same muscle groups. The appropriate schedule depends on exercise intensity, individual fitness, and recovery needs.
• Upper-body strengthening: For wheelchair users, exercises targeting the shoulder, upper back, and arm muscles may support transfers, wheelchair propulsion, posture, and daily activities. Balance pushing exercises with pulling exercises and using appropriate technique to help reduce shoulder overuse.
• Pressure relief: Individuals who use wheelchairs should perform regular pressure-relieving activities throughout the day. The technique and frequency should be individualized based on seating, mobility, skin condition, and functional abilities. Wheelchair push-ups are not appropriate for everyone; a physical or occupational therapist can help identify suitable alternatives.
• Lower-body strengthening: Individuals with lower-extremity movement may benefit from adapted leg exercises based on their strength, joint stability, sensation, and functional goals. Resistance, repetitions, and equipment should be selected individually rather than following a single prescription for everyone.
• Stability and positioning: Use appropriate supports, straps, or assistance when needed to maintain safe positioning and balance during exercise.
• Exercise variety: Vary exercises as appropriate to support balanced muscle development and reduce repetitive strain. Pay particular attention to shoulder comfort and overuse among individuals who rely on their arms for mobility and transfers.
• Equipment: Depending on individual needs and abilities, strength-training equipment may include free weights, resistance machines, medicine balls, cable or pulley systems, and elastic resistance bands.

Flexibility Training Guidelines

• Maintain joint mobility: Flexibility and range-of-motion exercises can help maintain joint mobility, manage muscle tightness, and support functional movement. Exercises should be tailored to the individual’s needs, abilities, and goals.
• Stretching and contracture management: Individuals with spina bifida may benefit from regular stretching and range-of-motion exercises to address muscle tightness and maintain joint flexibility. A physical therapist or other qualified professional can recommend appropriate techniques, particularly for individuals with limited movement, reduced sensation, joint instability, or other complications. Stretching may help manage risk factors for contractures but does not guarantee their prevention.
• Targeted muscle groups: Depending on the individual’s needs, a stretching program may address the hamstrings, hip adductors, hip flexors, calf muscles, and other muscle groups where tightness limits movement or function. Assisted stretching should be performed gently, without forcing a joint beyond its comfortable range.
• Positioning: Positions such as lying on the stomach may help stretch certain hip muscles for some individuals. However, positioning recommendations should be individualized according to comfort, mobility, skin protection, and medical considerations.
• Shoulder and chest flexibility: Gentle stretches for the chest and front of the shoulders may help maintain upper-body mobility, particularly for wheelchair users who rely on their arms for propulsion and transfers. Avoid painful movements or excessive pressure on the shoulder joints.
• Frequency and technique: Follow an individualized stretching and range-of-motion routine as recommended by a physical therapist or other qualified professional. Individuals with reduced sensation should monitor their skin and avoid excessive force, prolonged pressure, or positions that may cause injury.
• Types of flexibility activities: Depending on individual abilities and goals, options may include assisted or passive range-of-motion exercises, gentle static stretching, adapted yoga, and adapted Pilates. Standing frames may provide positioning and stretching benefits for some individuals when clinically appropriate and properly fitted.

Moving Toward Better Health and Well-Being

Physical activity can be an important part of health and well-being for people with spina bifida. With appropriate adaptations, individualized goals, and attention to safety, people with spina bifida can explore activities that support cardiovascular fitness, strength, flexibility, mobility, and participation in everyday life. The most effective exercise program is one that reflects each person’s abilities, interests, and goals. Working with healthcare providers and qualified exercise professionals can help identify appropriate activities, address potential barriers, and make physical activity more accessible and enjoyable. Everyone deserves opportunities to move, participate, and experience the benefits of an active lifestyle.

References:

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