A grandmother has said she is ‘pleased the truth has come out’ after a coroner called for new national protocols for hospitals following the death of her disabled granddaughter.
Toddler Lexie Harrison suffered from Zellweger Spectrum Disorder - a rare condition which left her blind and hearing impaired and she was not expected to live past her first birthday.
But she went on to live until she was two-and-a-half years old before dying in June 2013 following complications at hospital.
Assistant coroner Melanie Williamson said issues with her care revealed during the six-day inquest in Wakefield showed the case ‘cries out for regulation’.
Lexie’s grandmother Tracy Norton, from Walkeringham, near Doncaster, had told the inquest that despite numerous attempts to raise concerns with hospital staff in Sheffield and Leeds, Lexie was not given proper care and medication.
Speaking after a narrative verdict was given, Mrs Norton said the inquest had confirmed that Lexie had received substandard care.
“We are pleased the truth has come out. It is the right result for Lexie and for us,” she said.
“It is just a shame it has taken so long.”
The inquest heard Lexie had started suffering liver disease and seizures and was admitted to Sheffield Children’s Hospital for a routine procedure, but after complications she suffered internal bleeding and was transferred to Leeds General Infirmary.
She died at her grandparents’ home in July 2013 from liver failure.
The court heard that out of the three main liver centres in the UK in Leeds, London and Birmingham - only Birmingham had treatment guidelines for endoscopy procedures for children.
Ms Williamson said that both Leeds General Infirmary and Sheffield Children’s Hospital should adopt the same guidelines as Birmingham.
She said: “There needs to be national protocols in place so everybody knows precisely what to do if something goes wrong. This is a case that cries out for regulation.”
Ms Williamson said Lexie died as a result of liver failure and infantile Refsum’s disease – a condition linked to Zellweger Syndrome.
She criticised Sheffield Children’s Hospital for failing to tell Lexie’s grandparents that the toddler had only months to live after the condition of her liver deteriorated between March and May 2013.
The coroner praised the efforts of Lexie’s grandparents who had taken care of her since she was three months old. She told them: “To lose a child of two and a half is an absolutely traumatic experience for any parent, any grandparent, especially when they have had the input you have.”