It Won't Help His Chest
Carolyn Voisey
Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love noth...
Of all the Dude’s diagnoses, the small curve in his spine noted when he was 2 years old was the one that frightened me the most. This insidious diagnosis is the only one of my boy’s that is progressive. Around 80% of scoliosis cases are idiopathic (unknown cause). Only a small proportion will need surgery.
For my boy, the cause of his was his underlying neurological malformations. His muscles are normal, however his brain doesn’t send the right messages to them to hold his spine correctly. As a result, his curve would progress until it crushed his organs.
Not a pleasant prospect and one which put the fear of God into me and his Dad.
The Dude’s scoliosis is an S shape, the top of the S being the most significant as it was compressing his left lung and would eventually affect his heart. As his spine curved his other organs were being pulled around too, so his stomach was shifted out of position leading to an increase in reflux and vomiting; as puberty hit and his growth accelerated so did the rate at which his spinal curve progressed.
Until that point we’d managed his scoliosis well with the use of a sleep system to keep his spine aligned and a dynamic lycra orthotic suit.
As the top curve was most problematic this was corrected surgically in October 2023. His spinal team have always maintained that the surgery wouldn’t necessarily help his chest infections. In fairness to them, it may not have done so in isolation however it has meant that his daily chest physio is now vastly more efficient at helping him keep his lungs clear. And they are as thrilled as the rest of us with his progress.
After over a decade of fearing this diagnosis, it feels like a weight has been lifted. The Dude was lucky, he didn’t need growth rods prior to spinal fusion as we were able to keep his curve relatively stable/slowly progressing until he was 12. Spinal surgery is major and takes many months to recover, he has a way to go yet but is doing amazingly. While I am more relieved than I can put into words that it’s over and done with, it was absolutely worth it.
