Abstract
To describe the feasibility and effect of caregiver-mediated exercise training using a novel Therapeutic Play Gym in 3 neonatal intensive care unit (NICU) graduates with rare neuromuscular diseases. Caregivers of 3 medically complex, technology-dependent NICU graduates could not access community-based rehabilitation services after discharging from lengthy initial hospitalizations. These children, diagnosed with spinal muscular atrophy type 0, untreated X-linked myotubular myopathy, and untreated nemaline myopathy 3 (NEM3), completed monthly consultations with a pediatric clinical specialist and 3 assessment appointments. The caregivers agreed to administer a progressive Therapeutic Play Gym home exercise program at a minimum frequency of 3×/wk for 6 months. A monthly consultative approach was both feasible and effective to safely progress caregiver-mediated home exercise training using a novel Therapeutic Play Gym. Positive training effects emerged in fitness, function, and caregiver-reported quality of life domains. A strong therapist-caregiver alliance can empower families to perform guided training when community resources are limited. More research is needed to see whether this training model is feasible for children with other conditions; for use in hospital, outpatient, or educational settings; and as an adjuvant exercise treatment for children receiving disease-modifying interventions.
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