Petition launched for routine diabetes testing after death of two-year-old wrongly diagnosed with tonsilitis
The parents of a two-year-old girl who died from undiagnosed type 1 diabetes are campaigning for a new law to ensure babies and children are routinely tested for the condition as part of medical assessments.
Lyla Story died in her sleep just 16 hours after her mother had taken her to the GP with symptoms including more wet nappies, extreme tiredness and asking for water.
She was diagnosed with tonsillitis and given antibiotics but later died while lying asleep next to her mother.
The cause of death was undiagnosed type 1 diabetes, which led to acute diabetic ketoacidosis (DKA) and a gastrointestinal bleed.
When hospital staff performed blood tests while trying to resuscitate her, Lyla’s HbA1c level was 89 – more than double the normal range (42–43), while her ketone level was 6 – double the threshold of medical danger.
Her family say Lyla did not display any signs of type 1 diabetes in the weeks leading up to her death, and that the GP did not detect that Lyla also had COVID 19, which accelerated her type 1 diabetes symptoms rapidly and caused her immune system to break down quicker.
Other symptoms they reported to the GP included loss of appetite but drinking lots of water, vomiting multiple times, weight loss overnight, a large bowel movement three nights before her appointment and none since, uncharacteristic quietness and lack of energy.
Lyla’s family have now set up a petition calling for Lyla’s Law which would ensure:
Routine type 1 diabetes testing (urine and/or blood) in babies, toddlers, children and adolescents during medical consultations, particularly where symptoms warrant it
Greater awareness and adherence to existing NICE guidelines among healthcare providers
The protection of vulnerable children who cannot speak for themselves.
They also want more information around type 1 diabetes to be included in the ‘red book’ for babies and more training for health visitors.
Lyla’s dad, John Story, say his daughter’s case is not an isolated one and that he has received more than 140 emails from parents of children diagnosed with type 1 diabetes, with only two families reporting that their child was diagnosed at the initial point of contact with their GP. The rest were admitted to hospital in DKA stage and near death.
He said: “Our daughter was just two years old – bright, caring, sharing, full of life, counting into her twenties, bouncing on her trampoline, and dancing every day.
“Had her symptoms been more thoroughly investigated, even a simple urine test could have revealed dangerously high levels of ketones. A timely diagnosis would have resulted in an urgent referral, as required by NICE Guideline NG18, and Lyla would likely be alive today, managing her condition safely.
“Young children are often unable to express or describe their symptoms. It is therefore crucial that General Practitioners take the time to thoroughly assess all presenting signs and symptoms, leaving no room for assumptions.
“This isn’t an isolated case. Children continue to have missed diagnoses, sent home, and tragically pass away – all due to a lack of diabetes screening. Lyla’s diagnosis was missed despite presenting symptoms much worse than tonsillitis. Had diabetes screening be made mandatory, and NICE guidelines been properly followed, she, and many others would still be here today. Instead, we are visiting her in a cemetery and having to stay strong for our four-year-old son.
“Our daughter was failed by a system that too often overlooks the signs of type 1 diabetes in very young children. Our daughter deserved better. If her story can save even one life, then her legacy will live on.”