Child’s leg with colorful brace

Mobility for Children with Spina Bifida: What are the Factors to Consider? 

There has been limited research on mobility for children with spina bifida. Until more studies are conducted on the most beneficial physical therapy methods and limitations, pediatric physical therapists, occupational therapists, and other specialists must rely on current, accepted best practices. 

As defined by the Spina Bifida Association (SBA)1, mobility is defined as “the ability of a person to move within his or her environment and community.” Some children are able to walk and have a near full range of movement with minimal limitations due to spina bifida. Others, require assistive devices ranging from braces and crutches to wheelchairs. Their level of mobility depends on the severity of lesions and damage to their spinal cords. 

The SBA suggests that “In young children, mobility improves cognitive (thinking), physical, and social skills. Mobility allows people at any age access to the physical activity and exercise that is important to a healthy lifestyle.” 

For children age six to 12, the SBA offers the following published guidelines for parents to assess and address their mobility: 

  1. Healthcare providers will monitor your child’s movement and sensation, as well as developmental milestones that are specific to your child. Your child will also be monitored for changes in walking, bowel and bladder function, and body developments.  
  1. Your child’s providers can explain the different types of equipment available to help your child move. This may include walking aides and wheelchairs.  
  1. Your providers will monitor your child’s walking or wheeling ability with standardized outcome measures. They may recommend a walking study if ambulation is changing or to get information that will improve bracing.  
  1. Your child should continue flexibility, range of motion, and strengthening exercises to maintain mobility goals, whether he uses an ambulation device or a wheelchair.  
  1. Your child should be encouraged to put on and take off braces independently.  
  1. Your child should be educated about the importance of staying physically active to overall health. Adapted physical education and recreation therapy is helpful and can involve the whole family (Physical Activity Guidelines).  
  1. Children should start being involved in their own care. They should be taught to watch for signs of pressure sores, fractures, and changes in movement/sensation (Self- Management and Independence Guidelines).  
  1. It’s important that your child’s wheelchair fit[s] properly so it’s not too tiring to use and doesn’t put excessive strain on the body.  
  1. Your child should be encouraged to engage in weight-bearing activities every day to promote bone health (clinical consensus).  
  1. Your child should be encouraged to be socially active with peers, as many types of social activities increase movement. 

1 Adapted from “Spina Bifida: Your Guide to a Healthy Life” as part of Guidelines for the Care of People with Spina Bifida, 2018. Published by the Spina Bifida Association. https://www.spinabifidaassociation.org/wp-content/uploads/Mobility-Guidelines.pdf  

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