RE H A B CASE STUDY
PEDIATRIC POWER MOBILITY CASE STUDY: LYDIA
Written by: STEFANIE SUKSTORF LAURENCE, OT REG. (ONT)
Who initiates the decision to pursue power mobility for a child? A parent with their child’s needs at heart? A therapist with a clinical feel? A sales rep with a questioning mind? And what roadblocks prevent the pursuit of power mobility from moving forward? Physical, cognitive or emotional shortcomings of the child? Fear or lack of commitment by team members? Accessibility barriers? Cost? Lack of opportunity? Whether verbalized or unspoken, all these factors arise when evaluating a child for seating and mobility — which brings me to my story about one little girl.
MEET LYDIA I met Lydia in October 2018 after being asked to assist in creating custom seating for her. At the time she was 3 years old, with a diagnosis of nemaline rod myopathy. She was using a ventilator and fully dependent for her care secondary to global hypotonia. But she had a twinkle in her eye and a non-stop chatter of questions, comments and songs - albeit muffled due to her profound muscle weakness. She lived at home with her parents and dog in a small split-level bungalow in Northern Ontario. She was supported by both the care team at her local children’s treatment center and community mobility supplier. But she was at least an eight-hour drive (or a non-urgent ambulance flight) from any provincial treatment center that was experienced with a client of her complexity.
FIGURE 1
Despite modifications, Lydia’s trunk would collapse in her seating – 2018.
FIGURE 2
Lydia molded for new seating – 2018.
THE NEED Up to this point, she had been using a Thomashilfen adaptive stroller for her positioning and mobility but, as she had grown, the local team reported the seating system was no longer providing adequate trunk support (See Figure 1). I flew up to assist with the shape capture of a custom seating system, and the prescription of a new manual tilt wheelchair that could accommodate her ventilator, humidifier, suction machine, cough assist and associated medical supplies (See Figure 2). The idea of power had been floated by her mother, but more to accommodate the volume of her equipment than to provide independent mobility. Funding for power was not an option as she could not drive a power chair herself.
