Three-year-old girl died three months after doctors 'missed opportunities' to diagnose rare condition and sent her home from A&E - as her parents vow to sue NHS hospital where she was treated
- Ryleigh Hillcoat-Bee had a cardiac arrest and died on Monday, November 8, 2021
- Her parents are furious with Blackpool Teaching Hospitals NHS Trust for its care
A three-year-old girl 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 she became floppy and lethargic following a family trip to North Wales.
Doctors discovered that Ryleigh had elevated levels of potassium in her blood as well as 'extraordinarily high' levels of Creatine Kinase, which could have helped them diagnose her serious muscle condition rhabdomyolysis.
But instead of scrutinising Ryleigh's condition further, staff sent her home with a planned follow-up for six to eight weeks later.
However no follow-up was organised, and three months later Ryleigh was back in A&E after her parents Caroline and Andrew became concerned about her breathing.
Ryleigh Hillcoat-Bee suffered a cardiac arrest and died on Monday, November 8. Three months prior she was sent home from A&E despite tests showing she had 'extraordinarily high' levels of Creatine Kinase, which can indicate a muscle injury or disease
Ryleigh pictured with her parents Andrew and Caroline who said they were left 'infuriated' after the hospital phoned to arrange the follow-up tests a few days after her death. Now they have vowed to sue the hospital where she was treated
After arriving at Blackpool Victoria Hospital (pictured) on November 8, 2021, Ryleigh's condition rapidly deteriorated. She suffered a cardiac arrest and died there, the same hospital where she was born
After arriving at Blackpool Victoria Hospital Ryleigh's condition rapidly deteriorated. She suffered a cardiac arrest and died on Monday, November 8, 2021.
Her parents were then left 'infuriated' after the hospital phoned to arrange the follow-up tests a few days after her death.
Now they have vowed to sue Blackpool Teaching Hospitals NHS Foundation Trust where she was treated.
Following an inquest held last week at Blackpool Coroner's Court Area Coroner Alan Wilson ruled that there had been several 'missed opportunities' to scrutinise Ryleigh's lack of mobility before discharging her in August.
He noted that this could have led to more awareness that her deteriorating physical state 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 could have been contaminated with diarrhoea, despite Caroline and Andrew not noticing any.
Ryleigh's parents said: 'Doctors reassured us her illness was likely to be a one-off', according to the Manchester Evening News.
Three months after being discharged, Ryleigh spent Saturday November 6 watching Blackpool Illuminations and the day after visiting a soft play centre.
When she returned home she had fish fingers, chips and vegetables but after she went to bed she woke up at 8.30pm being sick, the court was told.
At one point in hospital Ryleigh's urine was 'as dark as Coca-Cola' but nurses suggested the sample could have been contaminated with diarrhoea, despite Caroline and Andrew not noticing any
It was only months after Ryleigh's death, after multiple tests were carried out 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 settled and went back to sleep but in the early hours of the next morning her mother woke to Ryleigh crying.
Her parents became alarmed about her 'raspy' breathing and decided to call 111 who advised them to take her straight to A&E.
They arrived at the hospital at 5.20am that morning, but Ryleigh's condition then rapidly deteriorated and, after suffering a cardiac arrest, she died at 7.43am on Monday November 8.
The doctors were left baffled by what had caused her to develop the cardiac arrhythmia, or irregular heartbeat, which led to her death.
It was only months later, after multiple tests were carried out by experts at Alder Hey, Sheffield and Newcastle hospitals, a repeat whole genome sequencing revealed she had a Lipin 1 deficiency.
Ryleigh's 'extremely rare' metabolic disorder caused her to develop rhabdomyolysis, a serious medical 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, the inquest heard.
In individuals 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, medical negligence solicitor, said: 'The hospital was given clear advice from colleagues in Leeds during Ryleigh's admission in August 2021 to seek specialist advice from a neuromuscular specialist'
The inquest heard the deficiency Ryleigh had been born with was 'extremely rare' and occurs in around one in every 200,000 people.
Representing Ryleigh's parents Diane Rostron, medical negligence solicitor, said: 'The hospital was given 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, identifying rhabdomyolysis, and advice on how to treat a flare up, would have followed. The hospital would and should have then provided this information to Ryleigh's parents while the root cause of Ryleigh's condition was being investigated.
'Ryleigh died on 8th November 2021 just three months after being discharged at the very hospital where she was born a little over three years earlier.
'Instead of being advised that Ryleigh was suffering from rhabdomyolysis and providing her parents with guidance on how to manage this safely, my clients were instead told that Ryleigh would recover as quickly as she became unwell.
'We believe that Ryleigh's death could have been prevented and have been instructed to pursue a medical negligence claim.'
Ryleigh's parents Andrew Hillcoat and Caroline Bee said: 'We are very upset at the loss of our little girl. We had to fight for a full inquest into her death and it has been a long and traumatising journey.
'We are devastated about the coroner's finding despite robust evidence that Ryleigh's rhabdomyolysis flare up in August 2021 could and should have been effectively managed.
'We believe that Ryleigh should still be here today, but she was not given any chance of survival.'
Caroline's sister-in-law Katie Hobbs ran the Royal Parks Half Marathon in 2022 and set up a fundraiser to raise money for the charity which raised more than £3,000
Ms Hobbs thanked all those who donated to the charity in March 2022
Chris Barben, Executive Medical Director at Blackpool Teaching Hospitals NHS Foundation Trust, said: 'I would first of all like to offer sincere condolences to Ryleigh's family and everyone touched by her life personally and on behalf of everyone at the Trust.
'While we know this cannot bring Ryleigh back, we will be carefully considering the Coroner's findings around the way the Trust conducted itself during this tragic incident to ensure that we learn everything we can from what happened and work to prevent anything like it happening again.'
Ryleigh's parents have been supported by The Compassionate Friends charity which helps families suffering the loss of a child.
Caroline's sister-in-law Katie Hobbs ran the Royal Parks Half Marathon in 2022 and set up a fundraiser to raise money for the charity which raised more than £3,000.
Katie wrote on the GoFundMe page: 'In November last year my sister-in law Caroline and her partner Andrew's daughter Ryleigh died suddenly and unexpectedly. Her loss has been devastating for her parents and everyone that knew her.
'She was a smiley, happy little girl who brought so much much joy and magic wherever she went.
'I am running for the compassionate friends because they have been a real support to Ryleigh's amazing parents through the toughest time of their lives. The charity have put them in touch with other bereaved parents and have organised a retreat they will go on to meet each other in person.'
