A DEVASTATED mum says Britain’s top children’s hospitals are “leaving her boy to die” as she races to raise £200,000 for life-saving surgery in America.
Kelly Harris, 36, claims Great Ormond Street Hospital (GOSH) made her son Harley’s rare spinal condition “100 times worse” after an operation to stop his organs being crushed.
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Now, doctors at Evelina London Children’s Hospital have allegedly deemed him “too weak to survive” another operation.
Harley Harris, 15, was born with an ultra-rare genetic disorder called Spondylocarpotarsal Synostosis.
It affects bone development throughout the body, and there are just 25 cases known worldwide.
Babies can look normal at birth, but as they grow their spines fuse and bend into dangerous curves, leaving them short, hunched and battling scoliosis, lordosis and other problems.
Despite years of concerns over his development, Kelly, from Welling, South East London, says her warnings were dismissed as “first-time mum worries”.
“He was missing milestones, he couldn’t sit up, he wasn’t playing with toys when he should have been,” she told The Sun.
“I begged them for years.
“If you look at his medical letters and children’s red book from birth, you will see ‘his mum has concerns about this’, ‘his mum has concerns about that’.”
In 2018, GOSH carried out an operation called an anterior spinal fusion to stop Harley’s spine crushing his organs.
But instead of using metal rods, surgeons reportedly fused bone from his ribs to his spine.
“It is like concrete,” Kelly said. “That operation destroyed him. It’s literally killing my boy.
“I know of two people who have the same condition as him in the world, one in Belgium and the other in Mexico, and they live normal lives.
“The one in Mexico is a child who had metal rods put in to make his back straighter, and he can go to school and can live life.
“The other is a woman in her 40s. And even though it took doctors nine years to diagnose her, she’s now living a normal life, she’s married, she works.”
It’s cruel and we’re running out of time. Give my boy a chance to live
Kelly Harris
As a result of the procedure, Harley’s right lung has collapsed, his aorta is enlarged, and his lung function has plummeted to 27 per cent, it is claimed.
He needs oxygen daily and struggles to walk, wash or even sit up without writhing in agony.
The Evelina allegedly told Kelly that Harley “wouldn’t wake up” if they operated again to “fix” his condition.
But according to the mum-of-three, who also suffers with disabilities, the hospital took nine months to come to the conclusion.
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She said: “That’s nine months he was left to suffer.
“They didn’t even sort his pain management out so that he could be relieved of the crippling agony he is in.
“In the end, they said he’d die on the table or be on a ventilator for life.
“Some doctors told me it’s the worst case of respiratory failure they’ve ever seen.”
GOSH surgeon ‘leaves children deformed’
By Ryan Merrifield, Senior News Reporter
CHILDREN at Great Ormond Street Hospital have reportedly been left with lifelong injuries after undergoing botched and unnecessary operations by a “rogue” surgeon.
Consultant orthopaedic surgeon Yaser Jabbar is under investigation over safety concerns about procedures he allegedly conducted on 721 kids in London.
Among the patients is a four-month-old baby. Another child is said to be facing amputation of a limb, The Sunday Times reports.
In total, the probe is said to have already found that 22 children came to harm – 13 of which have been noted as “severe harm”.
Others have been left with legs at different lengths, by as much as 20cm, while some are living with chronic pain years later.
Some patients have also been left with permanent deformities.
The concerns relate to limb reconstruction, a type of surgery that involves use of a clinical device known as an Ilizarov frame.
This metal apparatus was invented by a Soviet physician and is pinned to a child’s leg with screws, then gradually stretched to lengthen their bones.
Jabbar no longer works at the hospital, having stepped down in September 2023 after an 11-month sabbatical.
Records show he gave up his licence to practise medicine in the UK on January 8, 2024 – just four days after a series of conditions were placed on him by the General Medical Council (GMC), the doctors’ regulator, including requiring him to have a clinical supervisor at all times.
The hospital said in a statement: “It is vital that trusts undertake these kinds of reviews when underperformance is suspected. This ensures a culture of continuous improvement.”
On its wider cultural issues, the trust said it acknowledged the concerns, adding: “Like any hospitals we will have difficulties in relation to culture and practice and we are completely committed to improving these.
“We accept where there are failings. We are working on ensuring people feel freer to speak out, but there is more work to do.
“We commission reviews such as this when culture and performance are not of the expected standard, and we will follow the gold standard and learn from their findings.”
Jabber worked at the hospital between June 2017 and October 2022, according to a LinkedIn profile.
The “only hope” is top US surgeon Dr Lawrence Lenke, at Shriners Hospital in New York, who could perform a complex vertebral column resection to straighten Harley’s spine.
Kelly said: “It would require the surgeon removing small triangles from the spine to allow for normal back movement.”
But the surgery costs up to £200,000 – money which the family sadly does not have.
Kelly has launched a GoFundMe appeal to cover it. So far, only £6,000 has been raised.
She added: “If I don’t try, I’ll lose him.
“He’s 15 and spends all day in bed, in agony.”
Kelly claims the Evelina is refusing to send Harley’s MRI scans, X-rays and test results to Shriners, “delaying his chance of survival”.
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She said: “It’s cruel and we’re running out of time.
“It’s ridiculous. They come back to me three months later for administrative tasks I have already done.
“They want to help in America, but there’s nothing they can do without his files.”
Harley’s full-time carer dad, Ben Harris, 40, was rushed to hospital last week with suspected heart problems, possibly brought on by stress.
Harley’s two younger brothers also have additional needs, and the local council is building an emergency extension so Harley can live downstairs as he is unable to climb stairs.
Kelly said: “I can feel him slipping away, and it’s killing me. But I won’t stop fighting.
“I’m begging them to send the documents.
“Give my boy a chance to live.”
A spokesperson for Evelina London Children’s Hospital, part of Guy’s and St Thomas’ NHS Foundation Trust, said: “Since taking on Harley’s care, our clinical teams have discussed his treatment options with a wide range of medical specialists, including expert opinion from other UK centres.
“In making decisions and recommendations about Harley’s care we have weighed up the risks and benefits of the options available.
“We are continuing to support and care for Harley and his family.”
A spokesperson for Great Ormond Street Hospital for Children said: “At GOSH we care for children with some of the most complex conditions in the UK, who often have multiple health conditions.
“We are very sorry that Harley isn’t well, and to hear that his family weren’t happy with the care he received.
“We have had contact with the family about their concerns, which we have tried to address and we welcome continued engagement with them.”
