THE mother of an 11-year-old Weston boy who passed away unexpectedly has said that his death "could have been prevented".

On March 23, 2021, Kimberley Shepherd's world was turned upside down when her son, Liam, passed away in his sleep.

A Coroner’s inquest found that Liam's cause of death was 'sudden unexpected death in epilepsy' (SUDEP). 

Liam, who was due to start Priory Community School in September of that year, had experienced seizures in 2017 and 2020, although his condition remained undiagnosed until after his death.

When he was seven years old, Liam experienced his first seizure while he was asleep on the family sofa.

An ambulance was called and he was rushed to hospital. The paediatricians that saw him at the Seashore Centre, Weston General Hospital put it down to having a temperature from a virus causing febrile convulsions, which Enable Law says only occurs to children up to the age of six.

In 2020, just before his 10th birthday, Liam experienced a second seizure. This time he was taken to Bristol Children's Hospital for monitoring.

He was discharged the following morning. Kimberley was given a leaflet which had no information on night time seizures.

A follow-up appointment was due to take place within two weeks, but University Hospitals Bristol and Weston NHS Foundation Trust didn't see Liam again until four months later.

Once he was seen, the consultant said that they believed the seizure was caused by Liam being over-excited for his birthday. The consultant suggested that Kimberley purchase a baby monitor so that she could hear if Liam was having a seizure in the future, even though his seizures were silent.

Kimberley asked if she should purchase a video monitor or otherwise have Liam sleep in her bed so she could monitor him, but she was advised against both.

Since Liam's first seizure wasn't recorded correctly, the consultant treated Liam's second seizure as an isolated incident.

At an inquest in Flax Bourton in September 2023, the Coroner was critical of the medical care that the Trust provided to Liam.

Ceri-Ann Taylor, the specialist clinical negligence solicitor at Enable Law that supported Liam's mum, said: "There were opportunities for both treating teams that saw him to recognise his seizures and tell his mum how to monitor him to help keep him safe."

Kimberley said: "The NHS let my son down. His life was taken away from him just like that and I feel so sad about everything he is going to miss out on. His dream was to grow up and become a dog handler for the police.

"All of this could have been prevented if Liam was referred for further testing and monitoring."

Rebecca Maxwell, Chief Medical Officer at University Hospitals Bristol and Weston NHS Foundation Trust, said: “We are deeply sorry for the missed opportunities in Liam’s care and our thoughts remain with his family at this difficult time.

"We have already made improvements and we are committed to take any further learning from the Coroner’s findings.”

Since Liam's death, the Trust has increased the number of clinical nurse epilepsy specialists to help review and monitor patients. It has also appointed two additional paediatricians who have a special interest in epilepsy.

The expanded epilepsy team are reviewing the service.