Understanding the Challenge
Orthotic devices represent one of the most powerful but often overlooked tools in spina bifida management. A well-fitted brace can influence whether someone walks to school or relies on a wheelchair and whether they participate fully in daily life or watch from the sidelines.
Spina bifida occurs when the neural tube fails to close completely during fetal development, affecting spinal cord function and the nerves controlling leg movement and sensation. The location of the lesion, whether sacral, lumbar, or thoracic, determines which leg muscles function normally and which are weak or paralyzed. This creates distinct challenges: weak muscles affect standing balance and walking ability, reduced sensation makes skin vulnerable to pressure sores (requiring precise device fit), and ongoing changes in muscle tone and bone alignment demand periodic device adjustment. The spine and hips also require protection against long-term complications. Modern orthotic devices address these challenges by stabilizing joints, maintaining proper alignment, and compensating for weak muscles.
Choosing the Right Device
Device selection depends on neurological level, functional goals, and individual needs. There is no one-size-fits-all brace.
Ankle-foot orthoses (AFOs) are typically prescribed when hip and knee muscles function but ankle control is absent. They prevent toe-dragging and maintain proper stepping mechanics. AFOs range from simple, lightweight designs to more rigid versions depending on needed support.
Knee-ankle-foot orthoses (KAFOs) add knee support and are used when knee muscles are weak or absent. Modern composite KAFOs are lightweight and often include specialized knee joints that lock during walking but unlock for natural leg swing, reducing fatigue and effort.
Hip-knee-ankle-foot orthoses (HKAFOs) extend support to the hips and trunk, typically for high-level spina bifida. Walking with HKAFOs requires significant upper body strength and coordination and typically depends on crutches or walkers, making these devices better suited for specific activities than all-day wear.
Recent innovation has introduced powered lower limb devices like the Agilik—a motorized orthosis using battery-powered joints to assist walking. Individuals with high-level spina bifida (thoracic and upper lumbar lesions) who may not have been able to walk in traditional devices can now achieve standing and walking through weight shifts or mobile app controls. Beyond mobility, powered devices may offer cardiovascular, bone health, and psychosocial benefits by enabling more upright participation in daily life, though they require training and are best integrated into a broader mobility plan.
Making Device Decisions Together
The right device balances multiple competing needs. Clinicians and families should discuss neurological level and available muscle function, daily mobility goals, skin health requirements, growth considerations, physical fitness and acceptable fatigue levels, and comfort preferences that affect whether someone will actually use the device. A collaborative approach allows individuals and families to explore options, trial devices when appropriate, and adjust plans as needs and circumstances change.
Many people benefit from multiple devices—a lightweight brace for daily wear paired with more supportive options for specific activities.
Fit, Maintenance, and Care
A great device only works if it fits well. As bodies change from growth, weight shifts, or swelling, fit becomes critical. Adjustments can often be simple: adding or removing prosthetic socks accommodates minor volume changes, and some devices feature removable liners or adjustable padding. Daily skin checks for redness or swelling prevent serious complications, particularly where the device contacts the leg. Annual orthotist visits—or sooner if problems arise—catch issues early. For growing children, strategic device changes aligned with growth spurts minimize disruption.
Training and Outcomes
A device is only as effective as the person using it. Essential training includes learning to walk safely in controlled settings before community use, strengthening core and upper body for balance and stability, establishing daily skin care routines, mastering efficient device donning and doffing, and building confidence to solve real-world challenges. Tracking outcomes—whether faster walking speed, longer distances, or increased confidence—helps the clinical team make better adjustments and provides tangible markers of progress.
Practical Maintenance
Daily habits help sustain device performance and protect long-term health. Check skin every night for non-blanching redness or pressure areas, keep regular orthotist appointments to address small issues before they become major problems, and monitor how the device feels and performs over time. Investing in quality prosthetic socks can improve comfort and skin protection, while proper cleaning and storage help extend the life of the device. Most importantly, communicate promptly about any pain, discomfort, or fit concerns so adjustments can be made early.
The Bigger Picture
Orthotic devices have transformed lives, enabling children to attend school, teenagers to play sports, and adults to work and participate in their communities. However, devices are tools, not solutions. The real progress happens when device prescription combines with strong physical therapy, dedicated self-care, and support from a team that understands individual goals and values.
As technology evolves—increasingly lightweight materials, powered exoskeletons, and emerging innovations—mobility options continue to expand. Whether using traditional orthoses, powered devices, or combinations of both, the goal remains constant: maximum independence, participation, and quality of life. The most successful approach involves working with an experienced team that listens and collaborates, including orthotists, physical therapists, physicians, and caregivers. Ultimately, success is measured not by the device itself, but by what it enables a person to do.
Eric Weber, LCPO, FAAOP (D)
Hanger Clinic
Clinical Research Associate
Clinical Leader Lower Limb Care Excellence
Department of Clinical and Scientific Affairs
Institute for Clinical Research and Education
Chris Toelle, LCO
Hanger Clinic
Director, Clinical and Scientific Affairs
