Clinical Focus

Spina Bifida

What Is It, and How Does It Affect Mobility?

Spina bifida

Spina bifida literally means "split spine," according to Shellie Lackey, a clinical nurse coordinator at the Spina Bifida Clinic at St. Louis Children's Hospital.

That makes sense when you consider what is going on in the spinal column of someone with spina bifida.

"Spina bifida is the incomplete closing of the embryonic neural tube," says Lackey, which basically means that the spinal column doesn't close all the way.

The incomplete closing of the spine can leave a person vulnerable to nerve and spinal cord damage.

Types of Spina Bifida

According to the Spina Bifida Association, there are three main types of spina bifida: spina bifida occulta, myelomeningocele and meningocele.

Spina bifida occulta is a closed neural tube defect and the mildest form of the condition. In this type, there is a small gap in the spine but no opening or sac, according to the Centers for Disease Control and Prevention (CDC).

This type affects around 15 percent of healthy people, many of whom might not realize they have spina bifida, says Lackey. Spina bifida occulta is often called "hidden" spina bifida.

Myelomeningocele or spina bifida cystica is an open neural tube defect, and the type most people think of when they think of spina bifida.

"Myelomeningocele is the most severe form of spina bifida," Lackey says. "Parts of the spinal cord and nerves come through the opening of the spine. It causes nerve damage and other disabilities."

This type affects 70 to 90 percent of children with spina bifida, and sometimes these children also have fluid around the brain.

"If not treated this (fluid around the brain) can cause the person’s head to grow too big and may cause brain damage," Lackey says. "Most of these children will have an operation to place a shunt to remove the excess fluid."

The Spina Bifida Association reports that myelomeningocele usually occurs in the lowest part of the spine, although it can occur at any level.

Another category of spina bifida is meningocele. In this type, a fluid-filled sac pushes through an opening in the spinal column, but the spinal cord is not in the sac. Usually meningocele is not associated with nerve damage, Lackey says, and people with this type of spina bifida might have only minor disorders.

Mobility Effects

Spina bifida can affect mobility in different ways depending on the location of the opening and which nerves are affected. For example, some children might be able to walk independently, while others will require a wheelchair, explains Lackey.

For this reason, it is important to remember that no two individuals with spina bifida will have the same symptoms and outcomes.

Generally speaking, if mobility is affected, children will experience an irreversible decrease in or absence of sensation in their feet and legs, Lackey says.

Those with spina bifida occulta might not experience mobility complications, whereas those with thoracic myelomeningocele might not have sensation from the chest down, according to Lackey.

In addition, age plays an important role in whether mobility equipment is needed.

"Often as a child grows, walking can become more difficult due to the amount of growth, and weight changes can affect the effort it takes to maintain mobility," Lackey says. "It might eventually become more difficult to walk with crutches alone. … Often as they age and grow, using wheelchairs becomes more of a necessity, and the crutches are used less."

In some cases orthopedic surgeries might be necessary.

In addition, Lackey says orthoses can help prevent falling, prevent or reduce joint contractures, maintain bony or joint alignment after surgery, and provide an alternative to wheelchairs.

Role of Physical Therapy

Physical therapy can play an important role in preserving mobility for children born with spina bifida, and early intervention is key for building strength and selecting the right mobility equipment, Lackey says.

Lackey recommends that parents get "a consult for physical therapy at birth and continue to have their child assessed by medical personnel, physical therapists, occupational therapists and orthotists throughout their development and into adulthood."

The CDC says that a physical therapist can teach parents and caregivers exercises that can help with strength, flexibility and range of motion. In fact, regular physical exercise is important for babies with spina bifida. The CDC encourages babies with spina bifida to play with toys, such as activity mats, go to the park, and take advantage of free community programs geared toward babies with spina bifida.

The good news is despite mobility problems, around 90 percent of children with spina bifida live to be adults, according to the Spina Bifida Association.

"Never underestimate what (your) child might or might not achieve," Lackey says. "Get on their eye level as good communication is the key."

About the Author

Elisha Bury is the editor of The Mobility Project. She can be reached at consumer@hmemediagroup.com.