Boy, 6, dies of septic shock after rare second battle with Kawasaki disease
A six-year-old boy died following an incredibly rare second battle with Kawasaki disease.
An NHS trust will overhaul its paediatric care after the boy tragically died of septic shock.
Leon Singh was taken to hospital the first time he fell ill two years ago,after suffering from fever-like symptoms for 10 days and developing a horrific rash.
Mum Samantha Singh and dad Darshaw insisted it appeared to be a re-occurrence of the same infection he had beaten just six months beforehand.
But they claim their concerns “weren’t listened to” by medical professionals.
Little Leon was transferred to the critical care centre at the Evelina Hospital in London two days later as his condition rapidly deteriorated.
Despite initially appearing to respond well to treatment, his shocked parents were told their son’s brain had swollen and crushed itself.
Kawasaki disease has been more recently linked to coronavirus in children during the pandemic.
However the extremely rare inflammatory condition, which can prove deadly for some children, pre-dates the Covid-19 crisis.
Dartford and Gravesham NHS Trust admitted it had “failed Leon,” who died last year.
A four-day inquest last week examining the care Leon received found there were “missed opportunities” to diagnose septic shock and for effective clinical management and treatment to be carried out.
The Trust said the overall standard of care was not of an acceptable standard in a letter to his parents.
Leon’s mum said the “unbearable pain has got worse” and she still sees her darling dancing down the supermarket aisles.
Mrs Singh added: “We have had no answers about what happened. We don’t understand how this could have happened.”
The coroner’s court last week heard sepsis charts were not completed which would have helped to identify symptoms, and clinicians communicated poorly between each other.
Coroner Alan Blunsdon recorded a narrative verdict at County Hall in Maidstone, Kent, on Friday.
The inquest heard Leon spent 16 days in Darent Valley Hospital in Dartford, Kent being treated for Kawasaki disease in November 2018.
He made a “good recovery” but became ill again on April 21 the following year after his mum spotted a bad red rash on his belly after an Easter egg hunt.
Leon was taken to the same hospital on May 1, 2019, as he appeared lethargic and weak, was shivering, had shiny purple lips and a spotty rash.
The following day Leon’s feet, hands and areas around his eyes were swollen and he kept saying he was thirsty after suffering from diarrhoea every 15 minutes and struggling to pass urine.
He looked “completely out of it” at 10pm and Mr Singh called his wife to say “Leon’s condition had taken a turn for the worse” after his blood pressure plummeted.
The child had gone into septic shock but “this was the the first time sepsis had been mentioned,” according to Mrs Singh.
Leon was transferred to the children’s critical care unit at the Evelina during the early hours of May 3.
Mrs Singh said: “As he was taken to theatre he was reaching his arm out to me and saying ‘mummy help’.”
Later that day, the family were told Leon was doing “very well” after his blood pressure stabilised and might even be taken off his respirator, which Mrs Singh described as being “like a weight had been lifted.”
But at 9pm they were told Leon’s eyes were not responding to light tests which was a sign of brain damage.
A CT scan showed his brain had swollen and tragically crushed itself.
Judith Duffin, representing the Dartford and Gravesham NHS Trust, said doctors initially presumed he was suffering from a super-imposed bacterial infection and informed the parents they “didn’t think Leon had a re-occurrence of Kawasaki disease”.
She added: “He was being treated for potential sepsis but there was a possibility for a re-occurrence of Kawasaki, though this is not common.”
Around eight in every 100,000 children develop Kawasaki disease in the UK every year according to the NHS, with 72 per cent of those affected under the age of five.
Symptoms alongside a high temperature lasting more than five days include a rash, swollen glands in the neck, dry and cracked lips, red fingers or toes and red eyes.
It is unclear what causes the unpreventable condition but children can make a full recovery within six to eight weeks if diagnosed and treated promptly in hospital.
Around a quarter experience heart complications from swollen blood vessels and if untreated, it can be fatal in between two and three per cent of cases.
Mrs Singh said: “Nothing will ever replace what we lost when Leon died.
“He was the glue that brought our family together, and to hear throughout the inquest that there were missed opportunities to recognise and treat his sepsis is beyond heart breaking.
“It is unimaginable that this pain will ever go away.”
Mrs Singh also described Leon as “the most beautiful and amazing little boy” whose “smile would light up any room” on a fundraising page which earned more than £1,100 for The UK Sepsis Trust.
She added: “He brought me so much happiness and love in the little time we had and to lose him to sepsis has devastated our life.”
Solicitor Rebecca Brunton, of law firm Simpson Millar, representing the family said: “The family have been devastated by the loss of Leon.
“While they thank the Coroner for his time, the inquest has understandably been a very difficult time for them, especially with so much evidence to suggest that there were missed opportunities to diagnose him and provide swift, effective treatment.
“They are now desperate for reassurances that lessons learnt have been acted upon by the Trust, to ensure no one suffers as they have in the future.”
The Dartford and Gravesham NHS Trust has since apologised and told Leon’s parents it was determined to implement an action plan which will see all paediatric staff undergo a permanent teaching programme.
A Trust spokesman said: “We offer our sincere condolences and sympathies to the family for the tragic loss of their son Leon and the suffering that this has caused.
“We have shared all of our findings with the family and have apologised to them that Leon’s care fell below the standard that they were entitled to expect.
“We have now put a full range of actions in place.
“We have embarked upon a full review of paediatric care at Darent Valley Hospital, commissioned an invited College review and established a Children’s Board.
“We have already started sharing the findings of the review and the resulting actions with the Care Quality Commission (CQC).”
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