Mum who lost only child to rare epilepsy condition says she only found out from his death certificate

A mum whose only child died unexpectedly from a rare condition linked to his epilepsy is campaigning for greater awareness after discovering the unexplained phenomenon for the first time on his death certificate. Esther McLaughlin, 55, said her son, John Paul McLaughlin, was found dead aged 34 in his bed on January 9, 2022, from sudden unexpected death in epilepsy (SUDEP) - a term used when someone dies during or after an epileptic seizure for no obvious reason.

He had not been heard from in two days when he was discovered by his friends in his flat where he lived alone, a living situation his mother said she would never have allowed if she had known about SUDEP.

Esther said her son started suffering with “violent” tonic-clonic seizures, a form of seizure where an individual loses consciousness and their limbs jerk, at the age of 17 after he was hit across the head with a baseball bat in an altercation with a group of fellow teenagers.

READ MORE: 'I don't have £409 to give them... I'm really, really struggling'

The incident in 2004 was never reported to police according to Esther, but it saw John Paul hospitalised and he started having seizures within a few days before he was diagnosed with epilepsy two years later aged 19.

She said her son would suffer from between three and four seizures each week, leaving him with injuries such as bruises and carpet burns, but she has claimed they were both not made aware of SUDEP by John Paul’s doctors at the Queen Elizabeth University Hospital in Glasgow until she saw it written on his death certificate.

Esther, from Glasgow, is now campaigning online for greater awareness around SUDEP and has launched a petition calling on the medical community to endorse mandatory discussions about the risks as part of routine care for epilepsy patients.

"John Paul was my sidekick, he was like a little male version of me and I was very proud of him,” Esther, who is not married and lives alone, told the Press Association. "We had never heard of (SUDEP), we were never made aware of it and when the coroner’s report came through, I had to ask what it was.

“I know I maybe couldn’t have avoided SUDEP but if I had known about it, I would have made so many different life decisions.”

According to SUDEP Action, a UK charity working with bereaved families and individuals for epilepsy-related deaths, roughly one in 1,000 epileptic people die from SUDEP each year – with the possible causes being changes in heart rhythm, brain function, breathing patterns or a combination of all three.

“One day when he was 18, he was having seizure after seizure – he had about five," said Esther.

She said her son used to suffer with three or four seizures each week, which he took medication to help control, but said his convulsions made it difficult for him to socialise with friends or maintain a job. “He’d come round from the seizures and go straight to bed and lie down,” Esther said.

"It goes through the whole body, the whole goes rigid and John Paul would stop breathing – it’s the scariest thing I’ve ever seen. He would get so many injuries, I saw him with his elbow smashing against the wall one day and I was trying to throw cushions underneath him and bring him round. His face would be all carpet burnt and bruised. I just never, ever felt I had any support.”

“If I knew about SUDEP, he wouldn’t be in his own flat in the first place.”

Esther said she made arrangements for her son’s funeral, claiming she first heard about SUDEP when she saw it written as the cause of death on John Paul’s death certificate. “I had to go and read up about it,” Esther said. “It’s very unfair to get a diagnosis and cause of death that you’ve never heard of.

“We were never warned about getting alarms or given any kind of guidance along those lines – they never told us, they just let us get on with it. I feel it’s down to the neurologists as they would be the very ones to explain the risk (of SUDEP), which they should do anyway.”

Esther is now petitioning to raise awareness of SUDEP and calling on the medical community to endorse mandatory discussions of its risks as part of routine care for epilepsy patients. "I just don’t want this to happen to other parents and I want to spread more awareness,” she said.

NHS Greater Glasgow and Clyde, representing the Queen Elizabeth University Hospital, said: “We cannot provide further information on this due to patient confidentiality, however, our condolences are with this family on the passing of their son in 2022. Our clinicians understand the importance of discussing sudden unexplained death in epilepsy (SUDEP) and this has been standard practice in patient care since 2010. NHSGGC patients with epilepsy and seizures attending the neurology service are counselled by clinicians regarding the risks associated with seizures including the risk of accidents, injuries, and death, including SUDEP.

“Awareness is also continually raised by third sector organisations including Epilepsy Action, Epilepsy Scotland and SUDEP Action."