A MUM died suddenly just feet away from her newborn’s cot when her brain suddenly switched off due to a rare phenomenon.
Daniella Jane, 31, was found dead in bed by her partner Reggie, 29, near their now-nine-month-old son Ronnie in January.
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Last week, her mum Kerry Cook received the results of Daniella’s post-mortem examination, which revealed she died of sudden unexpected death in epilepsy (SUDEP).
The term describes cases where there is no clear reason why a person with epilepsy has died, according to the charity Epilepsy Action.
Kerry said she knew nothing about SUDEP until a few months before her daughter passed away, despite having raised two kids with epilepsy and visiting many hospitals over several decades.
Had she known about the condition, which kills around 550 people in the UK every year, the heartbroken mum said she would have been more present for Daniella, who was diagnosed with epilepsy aged nine.
At her worst points, she had up to 30 seizures a month.
Kerry’s younger daughter Georgia, 26, also has epilepsy and now fears she could suffer the same fate as her sister.
Kerry, 51, from Essex, said: “Both of my daughters got epilepsy; one of them had it for 21 years and my other daughter’s had it for 13 years.
“In all that time, I had heard of the word SUDEP but never had anyone explain it to me or what risks were involved.
“Then on January 24 this year, I got a phone call at 8.20am telling me that my daughter had passed away.
“If I had known the dangers, I would have gone and moved in with my daughter.
“All of the ifs and buts have tormented me greatly, but I just wish that someone would have highlighted the severity of the situation.
“Even the funeral home had never heard of SUDEP.”
Daniella was nine when she had her first seizure.
“She was sitting on the floor playing with her cousins and just fell backwards,” Kerry said.
“She was having a fit, jerking, shaking and making very strange noises, and this lasted for three or four minutes.”
Over the next few years, Daniella had seizures 20 or 30 times a month, often badly injuring herself in the process.
“In Daniella’s case, there were no triggers or warnings,” Kerry said.
“They would just hit her and she would drop to the floor.”
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The youngster tried different medication, which sometimes helped reduce the number of seizures for a while, but they soon returned.
At 17, Daniella didn’t want the condition to govern her life and decided to move into her own one-bedroom flat in Romford.
She worked several jobs, including as a teaching assistant and bartender, but each time her epilepsy got in the way and she was forced to quit.
Then, when Daniella fell pregnant in 2022, her seizures intensified and doctors advised her to have a Caesarean section for fear she could have complications giving birth.
After welcoming Ronnie on July 23, Kerry and Reggie kept a close eye on Daniella, whose seizures were now “out of control”.
“She went home and her partner Reggie did everything he could to look after her, but obviously bills have to be paid so he could not be with her all the time,” her mum said.
Daniella contacted Queen’s Hospital in Romford to ask for genetic testing to shed light on why her fits were getting worse.
A few weeks later, she received a letter saying there was no need for checks but that she was at risk of SUDEP.
While it is rare, the Epilepsy Foundation lists SUDEP as the leading cause of death in people with uncontrolled seizures.
My daughter’s brain just completely switched off
Kerry Cook
Kerry began researching online in September 2023 and suggested her daughter speak to a specialist about the condition, which most often occurs at night or during sleep.
Two weeks before Daniella was scheduled to have a hospital appointment, Kerry received the devastating phone call from Reggie.
“On January 23, her partner went to work to do a night shift, and Daniella was alone with the baby,” Kerry said.
“What I’ve been told now is that my daughter’s brain just completely switched off.”
Kerry said her daughter was wearing a type of smart watch that detects seizures at the time of her death, but it was broken.
On April 20, Daniella’s post-mortem report “unequivocally confirmed” that SUDEP was the cause of death.
Georgia, who lives one street away from her mum, now fears she could also be at risk.
‘EXTREMELY SCARY’
“She’s scared to be left alone and her mental health is going through the roof because she’s constantly overthinking the fears,” Kerry said.
“She just keeps saying to me, ‘Mum, I’ve had epilepsy for 13 years, I’m going to die of SUDEP, who’s going to find me?’
“It’s just absolutely heartbreaking. It’s extremely scary, I’m a nervous wreck.
“She already suffered some pretty horrific injuries, like losing her four front teeth when she went face first into a brick wall.”
What is SUDEP?
SUDEP is the sudden, unexpected death of someone with epilepsy.
They are otherwise healthy, and no other cause of death can be found.
Doctors know that SUDEP is connected to seizures, but no one knows the exact cause and there may be no single explanation.
The condition is rare, affecting around 550 adults with epilepsy in the UK each year.
Some things are understood to put you at increased risk. These include having uncontrolled seizures, sleep seizures, not taking medicine regularly, alcohol or drug dependency and living alone.
Seizure alarms or monitors, sleeping on your back and using safety pillows can help, experts say.
Source: Epilepsy Action
Kerry has launched a petition calling for people diagnosed with epilepsy to be informed about the “risks and dangers” of SUDEP.
“From the very second someone is diagnosed with epilepsy, they should be sat down with a specialist to explain the risks and if there is anything they can do to prevent (SUDEP),” Kerry said.
“You’ve got to learn what the best way is to manage your seizures by speaking to doctors and seeking support.
“When Daniella passed, I donated my daughter’s brain to the Epilepsy Society for them to do research and see if they could find any answers.
“Why did she have SUDEP? Why did her brain just switch off?”
Rebekah Smith, deputy chief executive at Epilepsy Action, said: “We know 87 per cent of people with epilepsy have told us their condition has had a negative impact on their mental health.
“This in turn can prevent them from seeking the support they need to manage their condition safely and look after themselves – all which can increase the risk of sudden unexpected death in epilepsy (SUDEP).
“SUDEP is rare, affecting around one in every 1,000 adults with epilepsy each year.
“A person’s individual level of risk will depend on how well controlled their seizures are, but we know that there are some factors which can increase the risks such as not taking epilepsy medication as prescribed.”
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