CaRi-heart technology
Revolutionary new technology to assess the risk of a serious heart condition or heart attack – many years before anything happens.
Rhiannon was an active 14-year-old girl. When she occasionally complained to her parents of some aches and pains in her back, there was no reason to think it was anything more sinister than sore muscles from one of her dance classes, or something she’d pulled whilst horse riding.
“We feel incredibly guilty about that now,” says Trevor, her Dad, looking fondly at Rhiannon with his arm around her. “But there was no reason for us to think it was serious,” Rhiannon reassures him, “we had no family history of scoliosis – none of us had even heard of it. And it never hurt enough to hold me back or stop me doing what I wanted. I was just as active as all my friends.”
It wasn’t until Rhiannon’s mum noticed her shoulders were misaligned in October 2021 that the family realised something was wrong. Her shoulder wasn’t where it was supposed to be. Rhiannon had been dancing the day before and so she and her parents thought she’d knocked it during a routine. They got her in to see a GP the next day.
“The GP felt down my back and did a few tests – then she asked us if we’d heard of scoliosis,” Rhiannon remembers. “I have private medical cover through my work that covers the whole family,” says Trevor, “so as soon as the GP told us a little bit about what scoliosis was, we asked for a referral to a specialist and contacted the insurer.”
Rhiannon saw her first specialist within a few days. She had her X-rays taken and then sat down for the appointment with the consultant. Rhiannon had a 52-degree curvature in her spine, and the consultant said she’d be referred to Mr Lucas at The Portland Hospital in London, a private hospital for children, part of HCA Healthcare UK.
The family immediately threw themselves into researching everything: the condition, Mr Lucas, and The Portland Hospital. They read patient reviews and Rhiannon joined support groups and spoke to other people with scoliosis, where she made friends with someone who’d had surgery before. The medical insurer didn’t originally have Mr Lucas as one of their listed surgeons, but thanks to Trevor’s persistence, the insurer approved him to treat Rhiannon and they got an appointment almost immediately.
“When we met Mr Lucas, he gave me some more tests and then ran me through my options. He told me I could choose surgery, or I would have to adapt as the curvature worsened. It would make everyday activities harder,” Rhiannon says, “and I knew that I didn’t want to be limited. I loved dance, I loved horse riding. But the surgery had real consequences. Mr Lucas told me I probably wouldn’t be able to touch my toes ever again and that it would be 18 months before I could dance again.”
“I could see her face when she was told about the timelines, she was determined to beat those targets. That’s just the type of person she is. There’s nothing she can’t do when she sets her mind to it.” Trevor says. “It wasn’t easy,” added Rhiannon, “I’m not going to sit here and tell you it was all sunshine.”
Rhiannon remembers, “There were some great moments: the hospital was great, and the staff were incredible – so unbelievably kind. They looked the other way once or twice when mum and dad stayed a little late. But even with all that, there were times I was in a lot of pain and felt like I’d made the wrong decision.”
Trevor nods. “Looking back now, I can’t believe how quickly she bounced back. But at the time, you couldn’t imagine her ever dancing again. But she did, and I sent Mr Lucas a recent video from a school dance to prove it. The physio team had her up and out of bed three days after the surgery. And it’s been mostly progress from there.”
“Mr Lucas was so pleased with my progress, and we all couldn’t believe I was touching my toes only three months after surgery, after he said I may not be able to do it again,” Rhiannon continues. “So, I went back to horse riding about nine months after surgery. And I had a little fall.” Trevor shakes his head. “A little fall from a horse. I can’t tell you what it was like getting the call to say Rhiannon had fallen. Between getting the call and her mum getting to her – it was the longest journey of our life.”
Rhiannon broke her collar bone, but her spine was fine. “It’s a fine balance, deciding what I want to do and matching that with what is safe. I can’t trampoline, or bungee jump, but I have other things I want to do now instead.” One of those things is raise awareness of scoliosis.
“My school have told me I can run an assembly for scoliosis awareness month in June for the younger kids to help them recognise the signs of scoliosis. If you catch it early, you can manage the curvature of the spine and maybe avoid surgery. I just want to help as many people as I can.”
Trevor looks at her with pride. “Rhiannon is so brave, and to see her overcome so much and then just think ‘how can I now use my experience to help people’ – we’re incredibly proud of her.”
This content is intended for general information only and does not replace the need for personal advice from a qualified health professional.