Family seek answers to child's meningitis death

A mother whose two-year-old daughter died after contracting two rare strains of meningitis within weeks of each other has said she will "fight for answers" following her child's death.

Leila Normington, from Wetherby, first contracted the disease in June 2023 and was treated at Harrogate Hospital, but when she became unwell again staff initially believed it was an upper respiratory tract infection.

An investigation by the hospital identified missed opportunities in Leila's care but could not confirm whether the death might have been avoided.

Harrogate and District NHS Foundation Trust offered its "deepest sympathies" but said a coroner had determined the death was from "natural causes".

Leila's mum, Sarah Normington, 42, said she and her husband, Mark, 48, had been left with "so many unanswered questions" about why a recurrence of meningitis was not considered sooner.

"What we witnessed was so horrific, Mark and I both have complex PTSD," she said.

"Contracting two strains of meningitis within the space of two weeks is a rare occurrence but it's not impossible, as in Leila's case.

"The pain is just indescribable, it really is, and we need those answers."

Leila, who had a history of respiratory infections, became unwell with a rare strain of pneumococcal meningitis in mid-June 2023 and was treated at Harrogate Hospital with antibiotics before being discharged on 6 July.

However, 11 days later her parents began a series of contacts with the hospital, either in person or on the phone, over concerns about a change in their daughter's behaviour, alongside a cough and some unsteadiness.

The family returned to the paediatric unit again on 22 July as she had fever and flu-like symptoms but, after being assessed by staff, she was sent home with a working diagnosis of an upper respiratory tract infection.

The following day Leila's parents took her back to hospital worried she had become increasingly unwell, was drowsy and may have suffered seizures at home, but at this stage staff continued to believe it was a viral infection.

After her mother raised concerns, she was later that afternoon taken to a treatment room where she suffered two seizures in front of her family.

A report would later confirm that her father had been "inappropriately" asked to time the seizures using a staff member's mobile phone during resuscitation attempts as the room did not have a clock on the wall.

It was only after this significant deterioration that doctors suspected Leila had a "very rare" recurrence of meningitis and sepsis.

Her condition continued to deteriorate, and she was transferred to a paediatric intensive care unit at another hospital early the following morning, where a CT scan revealed significant brain damage.

Leila was moved to Martin House Hospice where she died on 25 July 2023.

Leila's mum, Sarah, said she had raised concerns at the time about whether it could be a recurrence of meningitis.

"She'd been so unwell I couldn't sleep on a night because I was so concerned about how unwell she was becoming," she said.

"Because it mirrored exactly the same as the first episode of pneumococcal meningitis. I just felt so frustrated and I wasn't listened to."

A patient safety investigation report carried out by the trust identified multiple "missed opportunities" in Leila's care but "could not confirm through the investigation that if changed, this would have prevented her deterioration".

The report found there "could have been an opportunity to admit for observation" on 22 July based on her medical history and clinical presentation.

It said she "may then have recorded a high temperature which may have prompted further investigations", but the report was unable to say whether the "outcome might have been different".

The report also found that had antibiotics been given on this day she may have responded but that her clinical presentation at the time would not have led to them being given.

It also found that staff did not initially recognise that Leila had contracted a second strain of meningitis "due to her clinical presentation and the rarity of the occurrence".

It said staff would receive "further training" on this diagnosis.

The family has confirmed it is taking legal action against the trust, which has denied liability.

Isabella Whiteley-Tye, a solicitor with Irwin Mitchell, said the family felt they had not been listened to throughout Leila's care or the subsequent investigation.

"They just want that understanding as to what happened, if anything more could have been done and how that would have changed the overall outcome for Leila as well," she said.

Sarah said her daughter's death had "ripped our entire life and family apart" and that they would only find peace if they receive "the answers we desperately need".

A spokesperson from Harrogate and District NHS Foundation Trust said they offered their "deepest sympathies" to the family.

"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."