Reaching Past Spina Bifida
Early PT enhances future function
Monday August 17, 2009
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According to the Spina Bifida Association, SB is the most common birth defect, affecting one in 1,000 newborns each year. It develops in an embryo during the first month after conception, and manifests in newborns as a lesion where the spinal column did not close. SB can result in an incompletely formed spinal cord and malformed or absent portions of the vertebrae overlying the spinal cord. When the area of unfused vertebrae is large, the spinal cord may protrude beneath the skin in a cystlike fashion, exposing the vulnerable spinal cord and nerves to trauma and infection. The meninges around the brain also may be affected.
Spina bifida, Latin for “split spine,” is a medically complex neurological disorder in which patients face a spectrum of challenges — from brain damage to paralysis, to bowel and bladder disorders. To support patients’ diverse medical needs, many centers of excellence have assembled multidisciplinary teams of medical professionals, ranging from surgeons to therapists, to help patients with SB achieve their full potential.
“Most babies start PT and OT early,” says Amy Houtrow, MD, MPH, medical director of the Spina Bifida Program and Pediatric Rehabilitation at the University of California at San Francisco, one of California’s regional designated SB centers. “Among our many goals, we want to help young patients reach developmental milestones as close to age-appropriate as possible.”
Navigating the Neurology
SB often is identified in utero by ultrasound. Once diagnosed, most babies with SB are delivered by caesarean section to protect the delicate neural tissues of the spine. Soon after birth, newborns undergo surgery to close the lesion, preventing further nerve damage. Houtrow says the next concern is determining whether an infant has a Chiari II malformation, a brain stem defect, or “water on the brain” (hydrocephalus). About 80% of patients with SB will need surgery to place a shunt to help drain the fluid, keeping cerebral pressures under control. Other common problems associated with SB include full or partial paralysis, loss of bowel and bladder control, and learning disabilities.
Vicki Dakin, PT, a pediatric therapist in Tampa, Fla., has worked with babies with neurodevelopmental disorders for more than 30 years. She says starting PT between ages 0 to 3 is critical in helping children with SB reach their fullest potential. “The key is getting babies mobile as soon as possible so they can explore their environment and build their intellect,” she says.
A good foundation for infants with SB, she adds, is promoting tummy time to build the back and scapular muscles to foster early mobility. At Memorial Hospital West in Pembroke Pines, Fla., aquatic and land-based therapies help young patients with SB learn how to use their muscles and build endurance.
“The pool is welcoming and the temperature [92 degrees] helps with decreasing tone and increasing muscle movement,” says Cindy Tipping, PT, CLF, staff therapist at MHW’s aquatic therapy program. In the pool, Tipping uses assistive devices, such as floatation hip belts and weight cuffs, to support children in a supine position. Once children develop confidence in the water, PTs work with them on activities such as tossing rings, climbing steps, and pulling up from sitting to standing. Tipping says children often work harder and longer because they are free from the confines of gravity and motivated by water play.
“Their upper extremities are stronger, and with the confidence they gain in the pool, they are more willing to try things on land, like transfers,” she says.
Maximized Movement
At the Kennedy Krieger Institute, a specialty hospital in Baltimore for children with developmental disabilities, patients with SB receive traditional PT such as gait training, bracing, wheelchair consultation, and transfer and mobility training. However, a unique program developed by Karen Good, PT, OCS, staff physical therapist and neuroscientist, goes beyond classic PT to help maximize each patient’s mobility.
“Ten to 20 years ago, spina bifida was thought of as a static condition that couldn’t be improved,” she says. “Today we know motor and sensory function can be restored after traumatic injury to the spinal cord. I think we should have the same expectations for [patients with] spina bifida.”
After four years of research studying the use of body weight support treadmill training on babies born with SB, Good began to incorporate a similar technique at Kennedy Krieger. Patients with SB are seen there on an outpatient basis three to five times per week for two to three hours per day, during a one- to two-month period. This intensive regimen surpasses the traditional standard of care of hourly sessions held once or twice per week.
During each session, children spend time working on the body weight supported treadmill and the functional electrical stimulation cycle. Patient outcomes before and after treatment are measured using the American Spinal Injury Association Neurological Classification.
“For typically developing children, it takes a lot of repetitions — as many as 10,000 times, by some counts — to practice standing before they stand alone; a typically developing toddler walks, on average, 14 football fields in a day,” Good says. “Children with spina bifida never get anywhere close to that kind of repetition.”
Although the Kennedy Krieger program is still in its early stages, case studies show promise. For example, two children, both receiving traditional PT and making slow, incremental progress, spent 10 weeks in the comprehensive PT program with the following results:
• An 8-year-old girl with SB went from being nonambulatory to being able to walk short distances with braces and a walker.
• A 5-year-old boy with SB went from scooting across the floor and needing maximal assistance for standing to ambulating household distances with a reverse walker and leg braces.
“Looking at the spinal cords of [children] with spina bifida, they are still dynamic and developing in the first two years of life,” Good notes. “We need to tap into that potential by increasing repetition of movements. If a child is sitting because of paralysis or a lesion, we need to help move those kids that can’t move themselves.”
Resources
• Spina Bifida Association: www.sbaa.org
• Smith B, Moerchen V, Ulrich B. Body-weight support treadmill stepping in infants with spina bifida. Pediatric Physical Therapy. 2006;18(1):104-105.
Marnie McLeod Santoyo is a medical writer for the Gannett Healthcare Group. To comment, e-mail pteditor@gannetthg.com.
