Additional Needs

Going with the curve

Posted by Carolyn Voisey on 13th July 2021 Additional Needs, Advice & Support, Disabilities

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Before Sam was even born, he was pencilled in to meet the lovely Mr E - paediatric orthopaedic consultant extraordinaire. My own musculoskeletal issues/history meant that his hip development needed close monitoring. Before he was even a few years old everyone’s attention had moved rather further up, to his spine. Specifically, to the slight curve starting to form from the shoulder blades upwards.

I just sat down and cried...

I can still remember how it felt looking at the x-ray on the screen while cuddling my little boy, who was snoring softly in my arms. Then hearing Mr E gently explain that spinal curvature was almost inevitable for children like Sam who have neuromuscular disabilities. The brain just doesn’t send the correct information to his muscles; so they in turn can’t support his spine correctly and the weight of his head just pulls him over to the side. I came home and, as so often in those early days, I just sat down and cried.

Scoliosis can be idiopathic (cause unknown) or symptomatic (as in Sam’s case, where we know why its happening). It is remarkably common, more so in young women than young men. In many cases can be corrected by bracing. Unfortunately, for children like Sam, the scoliosis is progressive and WILL get worse to the point that it will start to compress his organs. It goes without saying that that is not a situation anyone wants.

Over the last 5-7 years, Sam has tried a few braces; a rigid ‘clam-shell’ style one, which he utterly loathed and which was swiftly returned to orthotics. He also had a much more comfortable ‘dynamic orthosis' lycra suit, made to Sam's exact measurements using x-rays to determine the curvature of his spine and how much correction is required. It has additional strength bands sewn across the suit to help gently but firmly support his body and realign his spine. While his ‘Up Suit’ doesn’t correct his scoliosis fully; it supports his spine sufficiently to slow the progression of the curve, eases the discomfort it causes and buys us precious time before the inevitable spinal surgery is required.

Sam's scoliosis has now reached the 'severe' level.

As the UK entered lockdown 3, we learnt that Sam's scoliosis had reached the ‘severe’ level. Surgery was now necessary. The pandemic means that we are likely looking at a long wait, even though it is considered urgent. I’ll be honest, the prospect of surgery is terrifying. However, the reality of what Sam’s future would be like if the curve is left to progress is far worse. I would do anything to swap places with my boy, but I can’t. Instead I’ll have to make do with continuing to marvel at his resilience and courage.