Spina bifida is a birth defect resulting from the incomplete development of the neural tube, the structure that forms the brain and spinal cord during early pregnancy. This condition leaves an opening in the spine, which can expose and damage the nerves and spinal cord, leading to a range of potential physical challenges. Mobility is a primary concern, and the ability to walk varies widely among affected individuals, ranging from walking completely without assistance to requiring a wheelchair for all mobility.
How Lesion Location Determines Mobility
The single greatest factor determining a person’s potential for walking is the neurological level of the lesion, which is the highest point on the spinal cord where nerve function is preserved. Damage to the spinal cord means that nerves below the affected area cannot send or receive signals, resulting in muscle weakness or paralysis in the lower body. A lesion located higher up on the spine, closer to the head, affects a much larger number of nerve roots, causing more widespread loss of muscle function in the legs and hips. Conversely, a lesion situated lower down the spine, near the hips or tailbone, affects fewer nerves and preserves more lower-body muscle control.
The severity of the defect also plays a role. Myelomeningocele is the most common and severe form, where the spinal cord and nerves protrude, leading to significant neurological damage and subsequent paralysis below the defect. A less severe form, meningocele, involves the protective membranes protruding without the spinal cord, often resulting in minimal nerve damage and function loss. The mildest form, spina bifida occulta, is a concealed defect in the vertebrae that frequently causes no symptoms or mobility issues.
The Spectrum of Walking Ability
The capacity for movement is directly categorized by the functional level of the lesion, which dictates the muscle groups that remain active and strong. Individuals with high lesions, typically in the thoracic or upper lumbar region (L1-L2), have little to no voluntary muscle control in their hips and legs. For these individuals, walking is not a functional form of daily mobility, and a wheelchair is required for independence and community access. Any ambulation achieved in this group is usually limited to therapeutic walking within a home or clinic setting, requiring extensive bracing.
People with mid-level lesions, often corresponding to the lower lumbar spine (L3-L5), retain some hip flexor and knee extensor function. They may be able to achieve household ambulation using assistive devices like crutches and braces. However, the energy expenditure required for this walking often makes a manual or power wheelchair the preferred choice for longer distances outside the home.
The best potential for independent walking is seen in those with low lesions located in the sacral region. These individuals have preserved function in most of the major muscle groups in the legs, including those that control ankle and foot movement. Many people with sacral-level spina bifida can walk independently or may only require minor orthotic support for stability. While they may still face orthopedic issues, their neurological capacity for walking is largely intact.
Maximizing Movement Through Support and Therapy
Achieving the maximum possible level of mobility depends heavily on consistent intervention from physical and occupational therapy, beginning in infancy. Physical therapy focuses on strengthening preserved muscle groups, maintaining joint range of motion, and teaching safe movement patterns. This work helps prevent joint contractures and maximizes the functional use of muscles that still receive nerve signals.
Therapists also prescribe a range of orthotic devices custom-made to support the lower limbs and compensate for muscle weakness. For those with mid-level lesions, Knee-Ankle-Foot Orthoses (KAFOs) or Hip-Knee-Ankle-Foot Orthoses (HKAFOs) are often used to stabilize the knee and hip joints for standing and walking. Individuals with lower lesions often benefit from Ankle-Foot Orthoses (AFOs), which stabilize the ankle and foot to improve gait efficiency and stability.
Assistive devices such as walkers and forearm crutches provide external stability and allow individuals to shift their weight, which reduces the energy cost of walking. Even for those who can walk with braces and crutches, a wheelchair—either manual or power—is an important tool for community mobility and independence. Occupational therapists further support movement by teaching skills for safely managing these devices and integrating them into daily life activities.