27 Jun

Isabelle's Journey: Embracing Life's Curves with Scoliosis

Saturday 19th June was the day then-4-year-old Isabelle was able to sink her toes into the sand, carefree, for the first time in years! After she was diagnosed with Scoliosis roughly 3 years earlier, she was put into EDF (Elongation/Derotation/Flexion) casts which she was unable to remove for 3 months at a time in an attempt to straighten her spine while her body grew. However, this meant no swimming, no beach, not even a bath for little Isabelle as she couldn't get the cast wet or dirty. That was until she was referred to Leeds and her journey with Kate Chauhan, Steeper Orthotist, began.

The story
Every parent longs for a happy and healthy child, so the minute Teresa, Isabelle’s mum, noticed a subtle deformity in her 1-year-old daughter’s spine, she knew something wasn’t right. Teresa said, “When I put her over my shoulder I could feel it, her back didn’t feel right. But we weren’t quite sure. With her being so young, we thought maybe it was just a sign of her growing. We took her to the GP and straight away they said it was likely scoliosis. It was quite shocking, to say the least. We received a referral and the long wait for a diagnosis began.”

That was in August 2018, it wouldn’t be until January 2019 that Isabelle would receive her official diagnosis, scoliosis - a condition that causes the spine to twist and curve to the side, affecting 2-3% of the world’s population. Their specialist got to work right away performing x-rays and designing a bespoke management plan. Isabelle’s condition was already progressing rapidly; within a month, they returned and Isabelle was put in her first EDF cast. Teresa was also warned that Isabelle would likely need growing rods surgically inserted against her spine by the time she reached the age of 6.

At the time, the casting method of treatment was preferred by her specialist, and they had high hopes for a successful treatment. But living with the limitations of wearing an EDF cast for 3 months at a time wasn’t easy for Isabelle or Teresa. To add to the complications, just 10 months later, Isabelle was diagnosed with congenital heart disease. Doctors needed to access her chest to perform open heart surgery, echo scans and other tests, so the EDF cast had to come off, and Teresa refused to have it put back on - there had to be another way.

The solution
It was around this time when Steeper Orthotist, Kate Chauhan, was brought in to help with Isabelle’s treatment. Their original specialist was hesitant to trial spinal bracing, but Kate had already witnessed its fantastic results on other patients and she was determined to make it work for Isabelle. Teresa said, “Meeting Kate has been completely life-changing. Isabelle missed out on so much in the EDF cast. She couldn’t swim or go to the beach, and even having a bath was impossible, it was a really difficult time. But the initial Boston brace and the Steeper made-to-measure spinal brace that she uses now are far less restrictive, she can do all those things and more again!

While the EDF cast wasn’t ideal, it did help Isabelle to understand the importance of her brace and how much better it is compared to the cast. There have been one or two times where she’ll say I don’t want my brace on. But most of the time, you just remind her of the EDF cast and she puts it straight on.”

However, spinal bracing doesn’t come without its drawbacks. When compared to the EDF cast, it is a lot more time-consuming to don and doff every day. However, Teresa is positive that the benefits largely outweigh any negatives. A “5 more minutes on the iPad” bribe every now and then is worth the increased quality of life Isabelle now gets to experience every day.

The turning point
Isabelle is now 6 years old and the reality of regular spinal surgery is looming closer... or so they thought. In a recent checkup, Kate was able to confirm that the results from the Steeper made-to-measure spinal bracing treatment have been so successful that she no longer needs the growing rods! Elated with the news, Teresa explained, “To insert growing rods, they would need to surgically screw rods onto her spine and every six months, they have to open it back up and lengthen them so she can grow with it. It’s very invasive. I know she will probably still need the final spinal fusion at some point, but to know that the treatment has been that effective, that she doesn’t need to go through a large majority of those traumatic surgeries, is just fantastic!”

An active spirit, Isabelle enjoys anything outdoors - football, playgrounds, monkey bars, and the trampoline just to name a few. Since moving into her brace, she has been progressively enhancing her running skills and takes inspiration from the world’s fastest sprinter, Usain Bolt, who also has scoliosis. Swimming is her all-time favourite activity, but due to multiple casts and the COVID-19 pandemic, she hasn’t had many opportunities to learn to swim. But now that she has more freedom, she’s determined to achieve the goal of swimming independently.

Teresa finished by saying, “I would like to say thank you. We feel very lucky to have met Kate when we did because this has been life-changing for Isabelle and for us as a family. For other parents going through this with their child, I’d say seek other opinions and give different things a go!”

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Isabelle's Journey: Embracing Life's Curves with Scoliosis

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