Listen to 'Defining Moment'
He is in a tall kneeling position on a mattress on the floor. The young boy's legs are curled under him unnaturally. His arms hang at his sides, twisted inward. His facial expression, however, is determined.
A sheet of white paper is balanced between hands he cannot open fully. He continues to manipulate them, however, as if to fold the paper by sheer force of will. He laboriously brings the edges together but, recognizing that they don't line up perfectly, flattens the paper to try again.
There is only limited active movement at his hands, wrists, and elbows, but he uses compensatory movements of his shoulders and trunk to maneuver his arms and hands. Fifteen minutes pass. Finally, he has meticulously folded the paper to just the right shape, having occasionally used his mouth to stabilize it. After looking approvingly at his work, he lifts toward me what clearly is a paper airplane.
He signals with a nod of his head that I am now to make his creation fly. I pinch the plane between my thumb and forefinger and launch it into the air. It flies forward only a foot before plummeting, its tip bending as it hits the floor. I'm fearful to look up and see his pained expression.
When I do look up, though, I see his teeth shining between smiling lips and his eyes sparkling with pride of achievement.
I am a physical therapist (PT) living and working in China. The preceding describes the first time I met "Theo," a 7-year-old with arthrogryposis, a condition characterized by non-progressive multiple congenital contractures.
Theo lives in a private orphanage in Beijing. I work for Eliott's Corner, a multidisciplinary pediatric therapy center. I had visited the orphanage at which Theo lives to explore ways our organization can help children through direct therapy services and staff training.
Theo's clear need for therapy, coupled with his patience, intelligence, and perseverance, compelled me to offer a pro bono assessment at our clinic. He arrived accompanied by the orphanage's director and medical director, as well as by his primary daytime caretaker. In the spirit of family-centered care, I first explored their goals for him. They wanted Theo to develop the independence to one day take care of himself. They asked us to focus initially on his ability to ascend and descend the stairs to his bedroom, and on his being able to transfer from the floor to the couch, a dining room chair, the bathtub, and other surfaces.
Examination revealed that Theo's feet were fixed in plantar flexion and inversion, and that he had fixed contractures at both knees, with available range between 15 and 90 degrees. Functionally, he could independently transition between supine, prone, sitting, and tall kneeling positions. Additionally, he could tall knee walk forward without support. His primary mode of mobility in the home was scooting on his bottom in an upright sitting position, using his legs to propel him. He had no form of independent mobility in the community, however, and thus was pushed in a poorly fitted manual wheelchair.
During the initial assessment, we worked toward the goal of him being able to ascend stairs rather than needing a caregiver to carry him. Theo was able to move from tall kneeling to sitting on a 4-inch step with cueing and contact guard assist. Because of his limited range of motion and the limited strength of his upper and lower extremities, he was unable to move to a taller step. Theo's caregivers and I agreed that the orphanage could fashion a 4-inch high platform that could be moved along with him to effectively reduce the height of each step. This would allow him to ascend the stairs with greater independence.
I look forward to hearing how this works, and to trying different approaches if it proves unsuccessful. I anticipate that subsequent therapy sessions will be held at the orphanage to provide functionally relevant interventions.
I can't help but wonder how different Theo's life might be now had his parents felt capable of caring for him with support from community resources. I wonder how independent he might be had he received multidisciplinary health care services from birth, as would have been the case in a developed country. Might he now be a functional ambulator, had he undergone orthopedic surgery to correct the lower extremity contractures? His current ability to tall knee walk suggests that possibility.
But dwelling on what could have been can breed apathy and inaction. Therefore, I turn my focus to what can be done to meet Theo's current needs. He can receive physical therapy at the orphanage 1 or 2 times a month to improve his independence in mobility and transfers. An occupational therapist from Elliot's Corner also can assess him and, in individual and co-treat sessions with a PT, can work toward such goals as eating with utensils and improving other self-care skills.
Many uncertainties remain regarding his future. Can the cost of ongoing therapy services be provided by a private sponsor or through the Olivia's Place Foundation, which offers funding for children who need therapy but whose families are unable to pay for it? Can we find a sponsor to provide the money needed for a power wheelchair that will facilitate Theo's independent mobility in the community? With such new independence, might a school in Beijing finally allow him to attend classes?
These unanswered questions directly influence Theo's prognosis and quality of life. By providing multidisciplinary and family-centered therapy services, facilities such as ours can empower children like Theo to live lives that can alter societal perspectives and approaches toward children with disabilities.
The image of Theo and his paper airplane sticks with me as I work with Chinese nationals to provide direct pediatric therapy, and to offer educational trainings to teachers, caregivers, pediatricians, therapists, and parents. I know that each interaction is a defining moment that will shape how Chinese community members, health care providers, and policy makers view children like Theo.
I want them all of them to see exactly what I see: an intelligent, patient, and lively boy who has the power to engage and influence the world around him.
April Gamble, PT, DPT, is employed at Eliott's Corner, a multidisciplinary pediatric clinic in Beijing that is a division of Shanghai-based Olivia's Place.The latter's mission is to provide and facilitate the development of international standards of therapy in China. Gamble's email address is firstname.lastname@example.org and her facility's website is www.oliviasplace.org.
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