A glimpse into overcoming spina bifida.
When Michael Sr. and his wife Juan were expecting their first child, their unborn son was diagnosed with spina bifida. Juan, who was eight months pregnant at the time was only aware that he was an unusually still child. The condition where the spinal column does not fully close during fetal development was foreign to her, as well as to Michael Sr. "We didn't know anything about spina bifida, but [the doctors] began to tell us what it was and how he would look," Juan says. "It was kind of a scary point for us. I was fearful." The couple began a steep learning curve by researching their son's condition. Following a successful cesarean section, Michael Jr. required immediate surgery. Even before he could be held, Michael Jr. underwent multiple procedures to correct lower-level spina bifida and hydrocephalus. "When he was in the ICU, I was afraid to hold him because of all the tubes on him," Juan recalls. But Michael Sr.'s lack of inhibition in handling his new son helped Juan to overcome her apprehensions. "In the beginning it can be scary, but as you work with it and gain knowledge it is not really as hard," Juan says.
Hospital stays, although brief, were necessary for the first year of Michael Jr.'s life. According to Chris Wallace, CPO, FAAOP, at Mississippi Methodist Rehabilitation Center in Jackson, Mississippi, who is actively working with Michael Jr. and his family, "the final goal is for the child to be functionally ambulatory to some degree—to have him in an upright position where he can have peer interaction [and] can meet his world on the same level as the other kids." Beyond social interaction, it is important for an individual to be placed in this functional upright position to increase renal functioning, decrease chances of urinary tract infections and osteopenia, and to control high tone and spasticity.
Therapists and Orthotists
|From left: Michael Sr., Michael Jr., and Juan|
Now five years old, Michael Jr. visits Mandy Walker, PT, twice a week in the outpatient Pediatric Rehabilitation Department in St. Francis Community Health Center. "I love working with kids," Walker says. "We try to turn work into play because play is the work of the child—that's how they get stronger and learn to do new things and different movement patterns." She says that physical therapists also need to educate parents on the diagnosis and how it will translate to "everyday life," such as the possible obstacles their child will encounter. "Sometimes we spend the whole session with the parent[s]," she explains, "The child is only at therapy for an hour, maybe two to three times a week, and the rest of the time is spent at home or at school." For Michael Jr., daily post-surgical stretches were prescribed to maintain the range of motion in his joints, and by the age of three he had short ankle-foot orthoses (AFOs) to keep him in the neutral position attained by the surgery. He eventually progressed to knee-ankle-foot orthoses (KAFO); however, this was a gradual process as hip dysplasia and lack of sensation in his lower extremities greatly complicated the delicate succession. "He didn't like his braces," Walker recalls. "They were hard to move and added extra weight." Due to some residual muscle weakness in Michael Jr.'s hips, they needed to move to hip-knee-ankle-foot orthosis (HKAFOs); however, Wallace—who worked closely with Walker on this case—presented the idea of putting Michael Jr. in a set of Otto Bock reciprocating gait orthoses (RGOs), a new Otto Bock product that had been introduced in the Louisiana area. All parties agreed, and in July of 2007 Michael Jr. became only the second patient in the United States to wear and walk in the Otto Bock RGOs.
"The key differentiation in the new RGO," explains Curt Kowalczyk, OT, of Otto Bock, "is that they set the walking joint at a 35-degree bias. In doing that, when the patient's leg comes out and they are starting reciprocal gait, the limb is advanced allowing for pelvic rotation up to 15 degrees, both internal and external rotation at the hip." The previous RGOs only allowed the user to move through one plane, while this one, possessing the new biaxial joint, allows the user to move in two planes, "which keeps the foot in the line of progression and decreases the energy expenditure of the user." Michael Jr.'s RGOs use only lateral uprights, which make the device lighter and less cumbersome to use. The system is modular, meaning it can be made longer and wider in the clinician's office without requiring refabrication. "When this is their only mode of mobility, it is wonderful to be able to make the adjustments in a day or so rather than shipping it out."
"[For] the first little while, it was all me," Walker says, as she remembers teaching Michael Jr. the very basics of gait, "and then one day he came in and just took off. The RGOs put him in a great position, so not only does it align his joints the way they should be, but it also assists with his leg movement so he does not have to put forth as much effort as if he were in regular HKAFOs." Wallace had a similar reaction to the new product. "I've been very impressed with them," he says. "One of the things that is very important with Michael...is the release mechanism for the hip joint." Two buttons on the front of the device pre-position the hips of the user before it actually unlocks, a safety feature that allows the user time to place his or her hands in a stable position; the device is then unlocked by the conventional hyperextension movement at the hip.
"This was the first time he was able to walk easily," Juan recalls.
|Michael Jr. gets up and walks to the chalkboard to answer his teacher's question.|
With his RGOs, Michael Jr. is uninhibited in his life. "When he got his braces and we began to tell him to work hard [to walk], that is what he started doing. In his mind he was determined to walk," Walker says. "He came in one day in a Batman suit with a cape and said, 'I'm not Michael today; I'm Batman.' 'Well hello, Batman,'" she said. "'We need your bat suit (referring to his RGOs).' So every day he comes, we strap him in his bat suit," Wallace laughs. "I am the trusty sidekick, Batgirl, and every one in the clinic has been given a superhero or villain counter-name." Each therapy session consists of the duo walking around to catch villains.
"He was a character from the very beginning," Michael Sr. reports.
Before acquiring the RGOs, Michael Jr., who attends pre-kindergarten in Monroe, Louisiana, would interact with his peers, but he often crawled in the classroom and was pulled to the playground in a wagon. "One day when he was walking at school the kids were excited and the teachers were excited for him," Michael Sr. says. "When he walked around in the classroom, all the hard work seemed worth it...when he walked to the playground, that was a first."
Juan remembers taking Michael Jr. to occupational therapy sessions as early as the age of one. Then the goal was merely to help him sit up by himself. "In the beginning watching him walk...was very painful. It was sad to watch him struggle," Juan says. "The first time I saw him walking with the braces it brought tears to my eyes as he wasn't...straining... It wasn't as hard for him." Wallace says Michael Jr.'s parents have played a key role in their son's success. "The Johnsons are really the ideal [family]...with both...involved in [Michael's] care. They both show up for appointments, they both are interested in what is going on, they both learn how to put the braces on and off, [and] they encourage Michael to use the braces."
At some point the energy expenditure for Michael Jr. to continue walking may become overwhelming, and he may choose to use a wheelchair. But for those who possess an imagination as vivid as his, there can be seen a light combing the skyline summoning more "superheroes" to help continue the moments of normalcy for Michael Jr. and patients like him.
Chelan M. Keeter, BSE, CNA, (formerly Chelan Pedrow) has recently married and is currently working as an engineer for the Department of Transportation. She will begin a nursing program in New York state in the fall of 2008.