A three-year-old girl has died three months after doctors “missed opportunities” to diagnose her rare condition and instead sent her home from A&E.
Ryleigh Hillcoat-Bee was admitted to hospital in August 2021 after feeling limp and lethargic following a family trip to North Wales.
Doctors found Ryleigh had elevated levels of potassium in her blood, as well as “extraordinarily high” levels of creatine kinase, which may have helped them diagnose her serious muscle condition: rhabdomyolysis.
But instead of further examining Ryleigh’s condition, staff sent her home with a follow-up scheduled for six to eight weeks later.
However, no follow-up was arranged and three months later Ryleigh returned to A&E after her parents, Caroline and Andrew, became concerned about her breathing.
Ryleigh Hillcoat-Bee suffered cardiac arrest and died on Monday, November 8. Three months earlier, she had been sent home from emergency despite tests showing she had “extraordinarily high” levels of creatine kinase, which can indicate a muscle injury or disease.
Ryleigh is pictured with her parents, Andrew and Caroline, who said they were “furious” after the hospital called to schedule follow-up tests a few days after her death. They have now vowed to sue the hospital where she was treated.
After arriving at Blackpool’s Victoria Hospital (pictured) on November 8, 2021, Ryleigh’s condition deteriorated rapidly. She suffered a cardiac arrest and died there, the same hospital where she was born.
After arriving at Blackpool’s Victoria Hospital, Ryleigh’s condition deteriorated rapidly. She suffered a cardiac arrest and passed away on Monday 8 November 2021.
Her parents were left “enraged” after the hospital called to arrange follow-up tests just days after her death.
They have now vowed to sue Blackpool Teaching Hospitals NHS Foundation Trust, where she was treated.
Following an inquest held last week at Blackpool Coroner’s Court, coroner Alan Wilson ruled there had been a number of “missed opportunities” to examine Ryleigh’s lack of mobility before he was discharged in August.
He noted that this may have raised awareness that his physical decline could be associated with a neuromuscular problem.
At one point in hospital, Ryleigh’s urine was “as dark as Coca-Cola”, but nurses suggested the sample might have been contaminated with diarrhoea, although Caroline and Andrew did not notice any.
Ryleigh’s parents said: “Doctors have assured us that her illness is likely to be an isolated case,” according to the Manchester Evening News.
Three months after being discharged, Ryleigh spent Saturday 6 November watching Blackpool Illuminations and the following day visiting a children’s play centre.
When she returned home she ate fish fingers, chips and vegetables but after going to bed she woke up at 8.30pm feeling ill, the court was told.
At one point in hospital, Ryleigh’s urine was “as dark as Coca-Cola”, but nurses suggested the sample might have been contaminated with diarrhoea, although Caroline and Andrew didn’t notice anything.
Just months after Ryleigh’s death, after multiple tests by experts at Alder Hey, Sheffield and Newcastle hospitals, a repeat whole genome sequencing revealed she had a Lipin 1 deficiency.
The three-year-old eventually calmed down and went back to sleep, but in the early hours of the next morning her mother woke up to see Ryleigh crying.
Her parents were alarmed by her labored breathing and decided to call 911, who advised them to take her straight to the emergency room.
They arrived at the hospital at 5.20am that morning but Ryleigh’s condition deteriorated rapidly and after suffering a cardiac arrest she died at 7.43am on Monday 8 November.
Doctors were left baffled as to what had caused her to develop the cardiac arrhythmia, or irregular heartbeat, that led to her death.
Just months later, after multiple tests by experts at Alder Hey, Sheffield and Newcastle hospitals, a repeat of whole genome sequencing revealed he had a Lipin 1 deficiency.
Ryleigh’s “extremely rare” metabolic disorder caused her to develop rhabdomyolysis, a serious condition that occurs when damaged muscle tissue releases its proteins and electrolytes into the blood, which can damage the heart and kidneys.
It can cause permanent disability or even death, according to research.
In people with Lipin 1 deficiency, a simple infection, such as a cold or chest infection, can trigger an episode of rhabdomyolysis.
Representing Ryleigh’s parents, Diane Rostron, a medical negligence solicitor, said: “The hospital received clear advice from colleagues in Leeds during Ryleigh’s admission in August 2021 to seek specialist neuromuscular advice.”
The research concluded that the deficiency Ryleigh was born with was “extremely rare” and occurs in about one in every 200,000 people.
Representing Ryleigh’s parents, Diane Rostron, a specialist medical negligence solicitor, said: ‘The hospital received clear advice from colleagues in Leeds during Ryleigh’s admission in August 2021 to seek specialist advice from a neuromuscular specialist.
“Had they done so, rhabdomyolysis would have been identified and advice given on how to treat a flare-up. The hospital should have provided this information to Ryleigh’s parents while the root cause of Ryleigh’s illness was investigated.
‘Ryleigh died on November 8, 2021, just three months after being discharged from the same hospital where she was born just over three years earlier.
‘Instead of being told that Ryleigh was suffering from rhabdomyolysis and providing her parents with guidance on how to safely manage this, my clients were told that Ryleigh would recover as quickly as she became ill.
We believe Ryleigh’s death could have been prevented and have been ordered to file a medical malpractice claim.
Ryleigh’s parents, Andrew Hillcoat and Caroline Bee, said: “We are so saddened by the loss of our little girl. We had to fight for a full investigation into her death and it has been a long and traumatic process.
‘We are devastated by the coroner’s finding despite strong evidence that the Ryleigh rhabdomyolysis outbreak in August 2021 could and should have been managed effectively.
We believe Ryleigh should still be here today, but she was given no chance of survival.
Caroline’s sister-in-law Katie Hobbs ran the Royal Parks Half Marathon in 2022 and organised a fundraiser to raise money for the charity which raised over £3,000.
Ms Hobbs thanked everyone who donated to the charity in March 2022.
Chris Barben, executive medical director of Blackpool Teaching Hospitals NHS Foundation Trust, said: ‘Firstly, I would like to offer my sincere condolences to Ryleigh’s family and to all those affected by her life personally and on behalf of everyone at the Trust.
‘While we know this cannot return Ryleigh to her home, we will carefully consider the Coroner’s findings about the Trust’s conduct during this tragic incident to ensure we learn as much as we can from what happened and work to prevent something like this happening again.’
Ryleigh’s parents have received support from The Compassionate Friends charity, which helps families grieving the loss of a child.
Caroline’s sister-in-law Katie Hobbs ran the Royal Parks Half Marathon in 2022 and organised a fundraiser to raise money for the charity which raised over £3,000.
Katie wrote on the GoFundMe page: ‘In November last year, Ryleigh, the daughter of my sister-in-law Caroline and her partner Andrew, died suddenly and unexpectedly. Her loss has been devastating for her parents and everyone who knew her.
‘She was a smiling, happy little girl who brought so much joy and magic wherever she went.
“I’m running for Compassionate Friends because they have been a real support to Ryleigh’s wonderful parents during the most difficult time of their lives. The charity has put them in touch with other bereaved parents and organised a retreat for them to attend to meet in person.”
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