Spina bifida is a birth defect, or a “neural tube defect,” that usually occurs during development prior to birth. Spina bifida, which is Latin for “split spine,” happens when the spinal cord, brain, or meninges (the membranes that form the protective covering around the brain and spinal cord) fails to develop completely. This incomplete closing can happen anywhere along the spine but most often occurs in the lower back and can be seen in an opening in the baby’s back at birth.

There are about 120 children born with spina bifida each year in Canada, and about 1,500 babies in the U.S. Most children with spina bifida face mobility and/or orthopedic issues. As with cerebral palsy, disabilities vary from one child to the next and can vary from mild to severe. And although there is no cure, treatment options have advanced significantly.

Similar to the deterioration in mobility in people with CP, a 2019 study of people living with spina bifida discovered that the percentage of “survivors” (in the words of the authors) who could walk at least 50 meters at 9 and 18 were 51 and 50 percent respectively. But by the time these same individuals had reached age 50, that percentage had plummeted to 27 percent.

To see one of our trial participants with spina bifida walking in the Agilik, check out this video from the NIH.

Types and Severity of Spina Bifida

There are three main types of spina bifida, defined by how much and where the spine was left exposed: spina bifida occulta, meningocele, and myelomeningocele. People with spina bifida higher on their spine (toward their head) are often paralyzed below the waist or need wheelchairs. (This is because the nerves no longer work as they normally would have in that spot.) While children with spina bifida further down their spine tend to have milder issues.

Others have no issues at all, may never even know they had spina bifida, and can move around with no difficulty and compete in most any sport.

According to Herbert E. Fuchs, MD, PhD, a pediatric neurosurgeon at Duke Health in Durham, North Carolina, “The level of spine affected,” he told Spine Universe, “is the most important factor in determining spina bifida severity. The higher in the back the opening is, the more severe the loss of normal function.”

“In general,” added the Spine Universe authors, “the type of spina bifida a person has is an indicator how severe its effects will be.”

More Physical Activity Means More Independence and More Possibilities

No matter how mild or severe a child’s spina bifida, though, what’s important is—as with cerebral palsy: movement. Mobility. Standing. Walking. “Increased physical activity for individuals with spina bifida,” according to the Spina Bifida Association, “may be critical since a loss of strength or fitness may lead to less independence and function in carrying out activities of daily living.”

Which is why the Agilik can be of such value to children with spina bifida. Our smart orthotic device, which is tuned to the challenges of each individual child, has shown great promise in clinical trials and in the field with children with crouch gait due to spina bifida.

After all, as encouraged on the website for the Hassenfeld Children’s Hospital at NYU Langone, which provides a range of rehabilitative treatments for children with spina bifida, “Physical therapy . . .  and other techniques to improve gait, muscle coordination, and balance. . .  can also help maintain range of motion in joints, build strength in weak muscles, and improve flexibility in stiff muscles.”

Physical Therapy + the Agilik = Prevention . . . and Promise

Other types of treatment can include surgery, other types of therapy (occupational, speech), or so-called “positioning devices” (a night-time brace that keeps certain parts of the body in certain positions—to prevent deformity or promote better body position).

But the most comprehensive is probably physical therapy. Which is where the Agilik comes in: at the stage of a child’s development where it can possibly prevent further impairment in some areas while promoting progress in others.

As pointed out elsewhere on the Hassenfeld site, “As a child grows, nerve damage can affect muscle tone, which may lead to changes in the alignment of bones. Weak muscle groups can cause tendons and ligaments in the foot or ankle to tighten, restricting movement.

“Muscle weakness or tight tendons,” it continues, “may also cause bones in different parts of the body to move out of position. As a result, a child may develop orthopedic conditions such as scoliosis or clubfoot, in which the feet are twisted inward at the ankle.”

Potential—Now and Later

The Agilik has the potential to circumvent or ameliorate such developments, while at the same time improving a child’s posture, muscle strength, and mobility. The Agilik can help children with spina bifida stand tall and walk strong—not just in their childhood years but beyond as well.

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