Spinal cord injury in infancy: activity-based therapy impact on health, function, and quality of life in chronic injury

Abstract

Introduction: Spinal cord injury (SCI) in infancy magnifies the complexity of a devastating diagnosis. Children injured so young have high incidences of scoliosis, hip dysplasia, and respiratory complications leading to poor health and outcomes. We report the medical history, progression of rehabilitation, usual care and activity-based therapy, and outcomes for a child injured in infancy. Activity-based therapy (ABT) aims to activate the neuromuscular system above and below the lesion through daily, task-specific training to improve the neuromuscular capacity, and outcomes for children with acquired SCI.

Case presentation: A 3-month-old infant suffered a cervical SCI from a surgical complication with resultant tetraplegia. Until age 3, her medical complications included scoliosis, kyphosis, and pneumonia. Even with extensive physical and occupational therapy, she was fully dependent on caregivers for mobility and unable to roll, come to sit, sit, stand or walk. She initiated ABT at ~3 years old, participating for 8 months. The child's overall neuromuscular capacity improved significantly, especially for head and trunk control, contributing to major advances in respiratory health, novel engagement with her environment, and improved physical abilities.

Discussion: From injury during infancy until 3 years old, this child's health, abilities, and complications were consistent with the predicted path of early-onset SCI. Due to her age at injury, severity and chronicity of injury, she demonstrated unexpected, meaningful changes in her neuromuscular capacity during and post-ABT associated with improved health, function and quality of life for herself and her caregivers.

Conflict of interest statement

AB reports grants from Kosair Charities, the Christopher and Dana Reeve Foundation, the Leona M. and Harry B. Helmsley Charitable Trust, contractual fees as an instructor from NeuroRecovery Learning Inc., President of the Board, NeuroRecovery Learning, Inc., non-for-profit, as well as royalties from Oxford University Press. The funding bodies had no input as to the study design, collection, and analysis of data and decision to publish. All other authors declare no conflicts of interest.

Figures

Fig. 1. Timeline for child’s medical and therapeutic interventions and outcomes from injury onset (3 months) to initiation of activity-based therapy program (35 months).

Dotted background boxes = respiratory history, dark gray boxes = musculoskeletal history, black boxes = pharmacological interventions, and light gray boxes = therapy history and equipment. PROM passive range of motion, WFL within functional limits, ABT activity-based therapy, PT physical therapy, OT occupational therapy, TLSO thoracolumbosacral orthosis, AFO ankle foot orthoses.

Fig. 2. Propped ring-sitting at initial evaluation.

Child was able to maintain this position for 30 s. She exhibited kyphotic spine, sacral sitting with posterior tilted pelvis (a), and tendency to laterally weight shift over right hip (b).

Fig. 3. Child learning to perform independent mobility.

a At initial evaluation, child utilized external supports and behavioral strategies to sit upright including hooking arms around armrests, chest strap, pelvic strap, and capital extension of neck to stack head over spine to position and control head. Parent report. a “And this is one of the things that I think people who don’t have a child with a disability take for granted as far as being able to put your child in a grocery cart. This has been a main problem for me for a long time because she couldn’t sit up. Now I can put her in a grocery cart. I don’t have to have a special seat or a special tool or a special anything. I can just go to the grocery store.” b By discharge, she was able to independently propel a manual wheelchair while navigating her environment using only a seat belt while maintaining trunk and head upright. Parent report. b “I never thought I’d have to child-proof my home with a child with a serious physical disability. She really wasn’t going any place that I didn’t take her or put her and since we’ve been here she is rolling from place to place, she’s much more physically active. And she’s getting into things that she’s not supposed to; which is good and bad, but mostly good”.

Fig. 4. Activity-based therapy intervention.

Training activities on the treadmill: a–c, and training activities off the treadmill: d, e. a Step retraining at age-appropriate speeds with partial body weight support and trainer facilitated stepping via manual cues. b Stand adaptability training activity target active trunk extension with “letter spelling” with arms to the side and overhead. c Stand adaptability training to facilitate trunk rotation while swinging a tennis racket and aiming at a ball. d Sitting with balloons passed at or above eye level to emphasize upright sitting posture and activate trunk extensors. Note therapist’s hands providing support at mid-to-low ribs and activity challenging trunk control above the support. e Facilitated stepping activity with manual facilitated sensory cues provided at legs and pelvis with partial body-weight support and posterior walker. f Community Integration. Therapists worked with family to integrate activities in the home and community to increase practice of newly developed skills by her changing neuromuscular capacity. In this instance, child is playing ball toss at a community event reinforcing overhead reach, trunk extension, and trunk control in manual wheelchair.

Fig. 5. Short-sitting posture.

Sitting posture at initial evaluation (a) and at discharge evaluation (b). At initial evaluation, child requires therapist assistance to sit, cannot sit independently even with arm support, and sits with flexed trunk, posterior pelvic tilt, and weight distributed to right side. a At discharge evaluation, child can short-sit without support by therapist and stand-by guarding only, uses minimal arm support, trunk is upright, and extended.

Fig. 6. Improved quality of life and participation.

a For the first time since injury, child was able to sit in a Barbie car for a haircut instead of having to be held in her mother’s lap. b, c She participated in numerous sports such as basketball and tennis from manual wheelchair. d She enjoyed fishing with her parents in the community.

Fig. 7. Spine x-rays diagnostic for scoliosis.

Spine X-rays at age 6 years 1 month (a, b) and 6 years 5 months (c, d). At 6 years 1 month when imaged in sitting without request for active upright posture, she demonstrated a pelvic tilt of 14° and a spinal curve of 57° (a) as well as kyphotic posture (b). Four months later she was imaged again, this time she was verbally coached to “sit up tall” and use her arms to assist. She demonstrated a 16.9° spinal curve (c), the curve was also assessed in supine without external support (d) also resulting in a 17° curve.