Will My Child With Spina Bifida Be Able To Walk?

It is completely natural to wonder what your child’s future will look like, and mobility is often the first long-term question parents ask. Whether your child will walk independently, use braces, or rely on a wheelchair depends primarily on where the open spinal dysraphism (spina bifida) defect is located on their spine ^[1]. Generally, children with lower defects are more likely to walk with minimal assistance, while children with higher defects usually rely on a wheelchair for everyday independence ^[2][3].

Every child is unique. While the location of the spinal defect provides a general roadmap, consistent physical therapy and comprehensive orthopedic care—which includes bracing and sometimes surgery to align bones or joints—will be essential to maximizing your child’s potential ^[4].

How the “Lesion Level” Predicts Mobility

Your medical team will often talk about the lesion level, which simply means the exact point on the spine where the defect occurred. Because nerves send signals from the brain down the spinal cord to the rest of the body, the nerves above the defect usually function normally, while the nerves at and below the defect are affected ^[1][5].

The lower the lesion is on the spine, the more muscle strength and sensation your child will likely have in their legs ^[4][1]. However, it is important to know that these levels are general guides, not absolute rules. Sometimes a child’s “functional level” (what they can actually do) differs slightly from their “anatomical level” (what the MRI shows), or one leg may be stronger than the other.

Sacral Lesions (Lowest on the Spine)

Children with sacral-level lesions typically have strong hip and knee movements and good control over their feet. Most children with sacral lesions become independent community walkers ^[2][6]. They may not need any equipment, or they might wear small braces that fit inside their shoes to help stabilize their ankles ^[5]. These are called SMOs (supramalleolar orthoses) or AFOs (ankle-foot orthoses).

Lumbar Lesions (Middle and Lower Back)

The lumbar spine is in the lower back, and outcomes vary depending on exactly which vertebrae are involved (numbered L1 through L5).

• Lower Lumbar (L4, L5): These children usually have strong hips and can bend and straighten their knees. They typically use ankle braces (AFOs) to help lift their feet and support their ankles ^[5][7]. Many are able to walk around their community, sometimes using crutches for balance ^[2][3].
• Mid-to-High Lumbar (L1, L2, L3): Children with these lesions might have weak knees or lack the ability to lift their legs. They often use longer braces that go past the knee (KAFOs) and use walkers or crutches for short distances ^[5][7]. As they grow older and heavier, walking takes a tremendous amount of energy. Many teenagers and adults with mid-lumbar lesions naturally transition to using a wheelchair for longer distances ^[2][6]. This transition is a normal sign of independence and energy conservation, not a regression or failure of physical therapy.

Thoracic Lesions (Middle of the Back)

Children with lesions in the middle of the back (the thoracic spine) usually have little to no feeling or movement in their legs. While they may use extensive bracing to practice standing—which is excellent for bone health and circulation—their primary way of moving around the world will be a manual or power wheelchair ^[5][7].

The Crucial Role of Therapy

Therapy will be a cornerstone of your child’s care from infancy. Mobility is a journey, and abilities can fluctuate during major growth spurts.

• Physical Therapy (PT): Helps strengthen intact muscles, teaches safe movement techniques, and works to prevent contractures (permanently tight muscles or stiff joints in the hips, knees, or ankles) that can make walking or wearing braces difficult ^[4][7].
• Occupational Therapy (OT): Crucial for building upper body strength, learning transfer techniques (moving from a chair to a bed), and mastering daily living skills, especially for children who use wheelchairs.

Note: While the spinal lesion determines lower body function, associated conditions like hydrocephalus or Chiari II malformation can sometimes affect overall balance and upper body coordination ^[4].

Fetal vs. Postnatal Surgery

If your child underwent prenatal repair (fetal surgery), research shows this can improve nerve function and increase the likelihood of walking independently ^[3][8]. However, fetal surgery is not a cure. If your child had their back closed after birth (postnatal repair), please know this remains a highly effective, standard-of-care procedure that stops further nerve damage ^[9][10]. Both paths require ongoing orthopedic and physical therapy support.

Warning Signs: When to Call the Doctor

While establishing a baseline for your child’s mobility is helpful, it is critical to know that a sudden or gradual loss of mobility is never normal. If your child begins to walk differently, loses strength, experiences new leg pain, or changes their bowel/bladder habits, contact your doctor immediately. This could be a sign of a tethered spinal cord (where the spinal cord becomes stretched as the child grows) or a shunt malfunction, both of which require prompt medical evaluation to prevent permanent nerve damage ^[11][1].

Framing “The Wheelchair”

It is common for parents to view walking as the ultimate goal and a wheelchair as a “failure.” In the spina bifida community, a wheelchair is simply a tool for freedom. For many children, a wheelchair allows them to keep up with their friends, save their energy for playing and learning, and explore the world independently ^[5][7]. The ultimate goal is not necessarily walking—it is ensuring your child can navigate their life safely, happily, and as independently as possible.