The heartbroken parents of a two-year-old girl who died after contracting meningitis said they ‘weren’t listened to’ as her condition spiralled.
Two-year-old Leila Normington, from Wetherby in Yorkshire, first contracted the disease in June 2023 and was treated at Harrogate District Hospital.
Just one month later, her parents took her back to the hospital after she had developed a fever that had lasted four days.
Despite her recent battle with the disease, medics did not consider the possibility that it had returned, despite concerns raised by her parents.
Instead, she was diagnosed with an upper respiratory tract infection and was sent home the same day on July 22, 2023.
Leila was rushed back to the hospital the next morning after her parents said she was suffering from seizures, but doctors still did not believe her meningitis had returned.
They eventually suspected that the disease had returned, but by then Leila’s condition had rapidly deteriorated.
Her parents, Sarah and John, were told on July 24 that she had suffered a catastrophic brain injury and would not survive.
Leila was transferred to a hospice, where she died the next morning.
A post-mortem later confirmed meningitis as the cause of death.
Leila Normington, two, was the only child of Sarah, 42, and Mark, 48,
A report into the child’s death described ‘missed opportunities in her treatment’.
It said that Leila could have been admitted on July 22, when she was first taken to the hospital, and started antibiotics sooner.
However, it could not confirm whether her death could have been avoided and the Harrogate and District NHS Foundation Trust has denied liability.
Leila was the only child of Sarah, 42, and Mark, 48. She was born after several failed attempts at IVF.
Sarah said Leila’s symptoms on July 22, were a ‘mirror image’ of symptoms she had experienced when she first contracted meningitis a month earlier.
She said: ‘In the days before we took Leila to hospital, she wasn’t herself.
‘Her behaviour had changed and she was suffering with seizures.
‘To us it felt like she hadn’t got over her meningitis.
‘However, when we tried to raise our concerns, we felt we weren’t listened to.’
On July 23, Sarah and Mark rushed their daughter back to hospital, and Leila was admitted to the pediatric ward at around 1.30pm.
They warned staff that she had a high temperature, problems with balance, was drowsy and had suffered seizures at home.
However, staff did not believe Leila had experienced seizures, an NHS patient safety report later found.
Medics continued to treat her for a respiratory infection and advised Sarah to take her to a playroom to wake her up and assess her alertness.
That afternoon, Leila suffered two seizures in front of her family.
Mark was asked to time the seizures, but because there was no working clock on the wall, he was told to use a staff member’s phone.
Investigators found ‘it was not appropriate’ to have asked him to do this.
‘It was absolutely awful seeing Leila so poorly and having seizures,’ Sarah said.
She added: ‘It’s something no parent should have to see, let alone be asked to help with.
‘All we wanted to do was to help our girl, but we felt powerless.’
Eventually, doctors suspected that Leila’s meningitis had returned alongside sepsis, but it was already too late.
Sarah and Mark said they ‘weren’t listened to’ after believing their daughter was suffering from meningitis again
In the early hours of July 24, she was transferred to a specialist paediatric intensive care unit.
A CT scan revealed she had suffered a catastrophic brain injury and would not survive.
Sarah and Mark made the agonising decision to move their daughter to Martin House Hospice, where she died on July 25, 2023.
Meningitis was later confirmed as the cause of death in a post-mortem.
Sarah said: ‘Losing Leila in the way we did is something that will stay with us forever.
‘Leila was the most adorable, loving and caring girl with the cheekiest smile.’
Sarah and Mark were concerned throughout their daughter’s time in hospital, that her meningitis had returned, but felt their concerns were ‘not listened to’ by doctors.
Sarah added: ‘We remain deeply concerned that Leila’s symptoms were a mirror image of the first time she contracted meningitis.’
‘We always got the impression we weren’t being listened to and later found out not all calls were properly recorded in Leila’s notes.
‘It remains difficult not to think the doctors didn’t take Leila’s previous diagnosis into account, despite everything we said, and by the time meningitis was considered again it was too late.
‘We were saying Leila was incredibly ill, but instead staff were saying it sounded like Leila hadn’t suffered seizures and to take her to a playroom.’
Leila suffered a catastrophic brain injury and died in a hospice on July 25, 2023. Meninigitis was revealed to be the cause of death
The report found the early warning scoring system used at the hospital did not properly account for parental concerns.
A section has since been added to record them.
Investigators also criticised the lack of support offered to Sarah and extended family during resuscitation efforts.
Sarah said: ‘Leila was born after several failed attempts of IVF. She was our only daughter and our world.
‘That we’ll never get to see her grow up and celebrate milestones in life like starting school and passing her exams devastates us.
‘We’d do anything to have Leila in our lives, but we know that’s not possible.’
She said she hopes the tragic situation raises awareness about the dangers of meningitis and the importance of early treatment.
A spokesperson from Harrogate and District NHS Foundation Trust said: ‘We would like to offer our deepest sympathies to the family and friends of Leila Normington.
‘Following Leila’s death, we commenced an investigation with an independent external expert.
‘We met with Leila’s parents throughout the investigation and shared our final report with them.
‘We also shared our findings with HM Coroner who determined that Leila’s death was from natural causes.’