Why the spine operation thousands of teens like BGT dancer Julia Carlile, 19, pin their hopes on might not be a miracle cure after all
- Julia Carlile and her dance troupe MerseyGirls made it to final of BGT in 2017
- Simon Cowell offered to pay for £175, buy chloroquine nz no prescription 000 tethering surgery for severe scoliosis
- She has since developed kyphosis, in which the upper spine curves outwards
Even by the normal standards of Britain’s Got Talent – a show that unashamedly tugs on viewers’ heartstrings – it was a particularly moving story.
Julia Carlile, just 15, and her dance troupe MerseyGirls made it to the final in 2017.
Then it emerged that despite her remarkable acrobatic talents, Julia was struggling with an extreme form of scoliosis – a growth deformity that causes the spine to curve.
It would have been difficult to believe at the time, watching her leaping and spinning across the stage, but her condition was so severe her ribcage was beginning to crush her lungs and she was in constant pain.
The schoolgirl from the Wirral and her friends in the dance group had been desperate to win the ITV show and its £250,000 top prize – not for fame but to fund an experimental operation to straighten Julia’s spine.
The life-changing surgery, known as tethering and available only in America, would leave Julia mobile enough to keep dancing. Her only option on the NHS – spinal fusion – would involve implanting metal rods into her back, which would leave her too rigid to perform.
Julia Carlile, just 15, and her dance troupe MerseyGirls made it to the final in 2017. Pictured: Ms Carlile today
Although MerseyGirls didn’t win the competition, chief judge Simon Cowell, touched by Julia’s bravery, offered to pay for the £175,000 treatment, enabling her to keep dancing.
Two years later Julia performed with MerseyGirls on Britain’s Got Talent: The Champions – wowing the audience with an acrobatic display and moving many, including the normally stoical Cowell, to tears.
And fellow judge Amanda Holden said: ‘You are a walking, dancing, hopping, backflipping miracle.’
But, almost two years since that spellbinding appearance, the situation has changed.
Speaking exclusively to The Mail on Sunday, Julia, now 19, reveals that her condition has worsened.
While the tethering operation straightened her spine, which at its worst curved sideways at a dramatic 100 degrees to the right, she now has a condition called kyphosis, in which the upper spine curves outwards, forming a hunchback.
And she has no option now but to undergo the spine-fusing operation she had hoped to avoid. Without it, the outlook is bleak. Julia says: ‘It will get worse and worse as gravity pushes it down and I eventually won’t be able to walk.’
It means an end to her dancing career – and Julia is, understandably, heartbroken. ‘Since the surgery, I’ve done so much dancing with MerseyGirls, so I wouldn’t change anything. But now it feels like everything I love is being taken away.’
Julia was struggling with an extreme form of scoliosis – a growth deformity that causes the spine to curve. Pictured: Julia with MerseyGirls on Britain’s Got Talent
Julia’s story highlights an ongoing debate over the options available for children with scoliosis on the NHS.
Although it affects up to four in every 1,000 children, just a fraction will have such profound problems that they require an operation. About 3,600 youngsters undergo spinal fusion on the NHS every year.
This involves titanium or steel rods, hooks, wires, and screws being implanted into the curved part of the backbone, in order to hold the spine straight.
It has been used for more than 30 years and for 95 per cent of patients it’s a complete success – their curve is corrected and they don’t need further surgery or treatment.
Princess Eugenie, now 30, underwent the eight-hour operation when she was 12, and is a patron of the Royal National Orthopaedic Hospital in London where it was carried out.
And although spinal fusion is still the gold-standard treatment for severe curvature, all patients suffer some loss of mobility in the spine, as the rods limit how much the back can flex.
Tethering, also known as anterior scoliosis correction, works in a different way. Instead of rods, a system of screws and a flexible cord is implanted.
Once in place, the cord is pulled tight, straightening the spine – but allowing the spine to bend and flex naturally, so there is no mobility loss.
Spinal surgeon Professor Ahmet Alanay, who runs a clinic in Turkey offering anterior scoliosis correction, says he has seen an increase in British parents coming to his clinic in the years since Julia shot to fame.
‘Parents today are worried about their children losing mobility from spinal fusion,’ he says. ‘You didn’t really hear this in the past.’
Julia’s mother Kate, 43, says: ‘We know families that have remortgaged their homes twice to pay for it.’
But it may still help girls of Lacie’s age
Lacie Carter, 14, dreams of becoming a professional dancer. But 18 months ago, the Bournemouth schoolgirl was diagnosed with scoliosis – threatening to dash her dreams.
Her mother Lora, 32, first noticed something was wrong when Lacie was trying on new clothes.
She says: ‘Her clothes suddenly didn’t fit her quite right, and when I took a closer look I saw her right hip was sticking out lopsided.’
An X-ray at Southampton General Hospital showed that Lacie had a 50-degree curve in the lower part of her spine – severe enough for spinal fusion to be necessary – and it has rapidly worsened.
Pictured: Lacie Carter, who dreams of becoming a professional dancer
Her father Mitch, a kitchen manager, says: ‘Lacie started feeling pains in her feet when she was dancing. Pretty soon after, she began to struggle.
‘She stopped being able to walk very far because of the pain. She used to dance in her room but she stopped that too.’
From the very beginning, the Carters decided they would do everything they could to avoid spinal fusion, and hope to have the tethering procedure with Prof Alanay in Turkey.
Mitch says: ‘Lacie’s curve was in the lower part of her back, meaning any fusion would severely limit her movement.’
They want to keep Lacie dancing. ‘She’s a dancer – it’s all she wants to do. She’s incredibly talented. She can do flips and do all sorts of moves, and has won competitions. She has a real future ahead of her,’ Mitch adds.
The surgery will cost £55,000 and the Carters have been fundraising online, but feel they are in a race against time.
Mitch says: ‘The longer we wait, the worse her spine will get.
‘It’s great that in the future children might be able to get this on the NHS, but by then it’ll be too late for Lacie.’
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But not every doctor is convinced about the benefits of tethering. Mr Julian Leong, consultant spinal surgeon at the Royal National Orthopaedic Hospital, says: ‘For the majority of scoliosis patients, spinal fusion is the best option. Many parents will push for anterior scoliosis correction when it might not necessarily be the right choice.’
Since tethering was introduced a decade ago, it has become clear that it is less successful in the medium to long term.
Mr Leong says about 20 per cent of patients who undergo tethering subsequently need further surgery. He explains: ‘The cord can break if the patient grows too quickly, or it may need tightening. But one of the main reasons is the op doesn’t give the results hoped for, and the patient ultimately needs spinal fusion.’
The more severe the curve of the spine, the less likely it is that tethering will work.
Julia is daunted by the prospect of a second round of surgery. She says: ‘Going into the first op, I thought I was strong enough to handle it, but it was a million times worse than I thought it would be.
‘I had to have two operations because of how severe my curve was. They had to break my ribs and my back. It was so painful.
‘I had to relearn how to walk afterwards. So this feels like I’m starting all over again. They’ll have to break my ribs and back again to fuse them. For ages I wasn’t sure whether I could go through with it. But it’s something that has to be done. There’s not really an option.’
A handful of UK surgeons began offering tethering in 2016, but two years ago NHS England ruled against offering it due to lack of evidence about the long-term outcomes.
Now parents who believe it is the answer for their children are looking abroad to Turkey and the US, where it can cost more than £50,000. If patients need to return for another operation, to have the cord adjusted, costs can spiral.
Prof Alanay has been offering tethering since 2014 and sees British patients every year. He is convinced it is a good option, but admits it is ‘not majorly superior to fusion’.
He adds: ‘Parents often see things on social media – extreme stories which fill them with fear. They think tethering is the only option they have. Fusion is predictable, we know the results. Tethering is for people anxious about losing an active life.’
But for many patients he believes the procedure is entirely justified. He adds: ‘You hear other doctors say tethering is just for professional athletes, but how can you tell parents of a young girl who loves to dance that her dreams are expendable because she isn’t a professional?
‘My own daughter loves sport, and if you asked me would I prefer for her to have tethering or fusion, I’d say tethering every time.’
However, Mr Leong believes the loss of mobility from fusion is often overstated. He says: ‘Yes, fusion will leave you stiffer and yes maybe in the most extreme cases you might struggle to touch your toes, but this isn’t the case for everyone. I’ve seen gymnasts fused in their lower back who are still able to do backflips.’
He admits that certain patients between eight and 15 could gain from tethering. as fusion can stunt growth, whereas tethering may allow the natural growth of the spine.
But he warns that kyphosis, the hunchback complication Julia has developed, is commonly seen after tethering, adding: ‘The way the cord pulls can compress the front of the spine, making kyphosis more likely.’
Julia’s mother Kate says that the US doctors were honest about the potential risks and adds: ‘We knew it might not sort everything, but we had to try.’
Despite his reservations, Mr Leong is heading up the first NHS trial into tethering. It will take place at the Royal National Orthopaedic Hospital and Mr Leong says he hopes to begin treatment next year of 35 patients aged between eight and 15.
‘If the results are positive it’s entirely possible this treatment could be offered widely,’ he says.
Since BGT, Julia has used her fame to raise awareness about scoliosis. She says: ‘So many girls get in contact with me over Instagram. I love speaking to them.
‘I know I felt like I was alone when I was going through it. Everyone goes through stuff and scoliosis is so common. I just want to try to help as much as I can. I was so fortunate to have tethering, and it gave me those extra years of dancing. There are loads of people who could benefit from it and are struggling.’
Julia has also found a new passion in acting. This year, she starred in the Sky Atlantic drama Tin Star, alongside Tim Roth.
She said: ‘It was only meant to be a small part but Tim really liked me and we got on well, so he managed to extend my part.’
Julia hopes the role will help kick-start a career. She says: ‘I’ve got auditions coming up this year. I’ve got an agent now. I’m excited to see what happens.’
COVID Q&A: Is the Oxford vaccine really no good for the over-65s
Is it true that the Oxford vaccine doesn’t work as well for older people?
A German newspaper reports claimed that the Oxford AstraZeneca jab offered only eight per cent protection to over-65s.
Then, on Friday, Germany’s vaccine authorities announced they would not be recommending the Oxford vaccine for this older age group – even though the EU medicines watchdog, The European Medicines Agency, have now approved the Oxford vaccine for use throughout the EU, including Germany, for all adults.
Germany is not taking a different approach because the jab doesn’t work for that age group or because it is unsafe, they have qualms about the amount of evidence available.
More than 23,000 people around the world were given the Oxford vaccine as part of clinical trials in 2020.
However, over-65s were recruited much later in the process, meaning the data for this age group is limited.
It’s generally agreed that studies showed that the immune system in older age groups responded strongly to the vaccine. There were only two cases of Covid reported in over-65s involved, compared to eight among people in the same age group given a placebo.
German regulators believe this is ‘insufficient data’ to recommend its use, and intend to use the Pfizer and Moderna vaccines for this age group. But health officials in the UK are confident. Dr Mark Ramsey, head of immunisations at Public Health England, called the Oxford trial data ‘very reassuring.’
Have the symptoms of Covid changed now?
Last week data was released showing that people with the new Kent variant developed symptoms that differed from the first variants.
People with the mutation are more likely to get a cough, sore throat, tiredness and muscle pain.
They are also less likely to lose their sense of taste and smell or report high temperatures, both generally understood to be primary symptoms of the original virus.
Warwick University virologist Professor Lawrence Young said: ‘This variant is more transmissible and infected individuals appear to have more of the virus in their bodies.’
This, he added, could account for the rise in those reporting muscle pain and fatigue.
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