Mother who lost only child to rare condition says she only learnt about it from death certificate
A mother whose only child died unexpectedly from a rare condition is campaigning for greater awareness after discovering the unexplained phenomenon for the first time on his death certificate.
Esther McLaughlin, 55, from Glasgow, 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 lifeless 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.
The incident in 2004 was never reported to police according to Esther, but it left John Paul in hospital for one day and he started having seizures within a few days before he was diagnosed with epilepsy two years on.
She said her son would suffer from between three and four seizures each week, leaving him with injuries such as bruises and carpet burn, 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.
She is now campaigning 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 PA Real Life.
“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.
Esther said John Paul was 17 when he was hospitalised for one day after being involved in a scuffle with a group of fellow teenagers.
The incident was never reported to police but Esther said she feels it contributed to his subsequent health problems – although she added his doctors could not confirm the incident was directly linked to his condition.
“He definitely didn’t have epilepsy or seizures before that and after the tonic-clonic seizures kicked in and they were so violent,” Esther said.
“One day when he was 18, he was having seizure after seizure – he had about five.”
Esther said John Paul was diagnosed with epilepsy at the age of 19 after undergoing a series of tests.
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.”
On January 7, 2022, Esther said she and some of John Paul’s friends suddenly found they could not get in touch with him – but she said it was not too unusual as it would often take him a few days to recover from a seizure.
However as time went on they became concerned and on January 9, John Paul’s friends paid a visit to his flat in Glasgow, where he lived alone, and discovered he had died in his bed.
“He was at the side of his bed, covered up in his quilt just lying there,” Esther said.
“That day was awful.
“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.
“There shouldn’t be that surprise at the end where you’ve never heard about SUDEP, people need to be warned.”
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.”
To find out more, visit Esther’s online petition.
