A MUM has described the heartbreaking final moments of her five-year-old boy, who died in the arms of his adoring parents.
Sam Liew, from Mickleover, Derby, was originally thought to have an ‘everyday virus’ when he contracted a fever.
But his condition quickly deteriorated, and when he suddenly had a series of violent seizures, he was hospitalized.
Sam’s parents Rachel and Jim watched in horror, feeling helpless as doctors desperately tried to figure out what was going on.
They put an unresponsive Sam in an induced coma and tried all sorts of anti-seizure drugs for the next seven weeks.
They discovered that Sam suffered from an incredibly rare condition called Febrile Infection-Related Epilepsy Syndrome (FIRES), which is typically triggered by a minor infection, such as the common cold.
Tragically, the aggressive and non-stop bouts caused catastrophic brain damage, wiping out any chance that Sam could lead a decent, quality life.
After seven weeks, Sam was running out of options and doctors decided to stop treatment and remove his breathing tube.
On this morning, May 8, 2021, Rachel said “time seemed to stand still.”
For 90 minutes, nature-loving Sam tried to save his own life but was unable and broke his parents’ hearts.
Rachel said: “We told him not to be afraid but to walk into the light and he would meet people who loved him so much .
“And so our beautiful little boy died in the arms of his mum and dad.”
My boy’s last words
Writing about the charity Sam’s Superheroes, Rachel said Sam experienced “a very high fever, mild nausea and lethargy” over a weekend in March 2021.
She said: “I asked him if he would like a drink of water. He said “no mom,” which I found odd after getting medicine.
“I didn’t know it at the time, but they were the very last words I ever heard my son say.
“I sat Sam on our kitchen table while I got him a cup of water for bed and I noticed that he was drooling and blistering.
“Half laughing, half panicking, I asked him why he was blowing bubbles. Sam didn’t answer… [he] collapsed unconscious in my arms.”
Rachel called 999 and Sam was transferred to the Derby Children’s Emergency Department. In the ambulance, he no longer talked, cried, or reached out to his mother.
“In the ambulance, I knew something was terribly wrong with Sam, let’s call it Mom’s intuition,” Rachel said.
Sam suffered two more seizures in hospital, which compressed his airway, and it was decided he needed to be transferred to the pediatric intensive care unit at Queens Medical Center Nottingham.
Doctors put him in an induced coma and his parents, while desperate, were confident that the seizures could be stopped.
They were assured that there was a “huge log of anti-seizure Medications” that Sam could be given.
However, Rachel recalled: “Medications worked at first, but then his brain found a way around them and he started convulsing again.
“It was absolutely devastating and heartbreaking. I was scared, an emotional wreck and torn to pieces.”
A team of neurologists revealed Sam had FIRE, causing a previously healthy child to have consecutive seizures lasting 24 hours or more.
The Epilepsy Foundation says children with FIRE have a relatively mild infection with a fever two weeks to 24 hours before the onset of seizures.
About one in ten children with BRAND die, and those who survive have long-term disabilities.
brain “eaten away”
Rachel said they were told within a week of Sam’s first seizure that MRI scans showed he would have significant disabilities at best.
The mother said: “It was also not yet understood what was causing these seizures as it did not appear to be an infection like meningitis and was not genetic.
“It was basically like fighting someone blindfolded.”
MRI scans showed that lesions in Sam’s brain caused by tissue death deepened, leaving “holes” in his brain that filled with pockets of fluid.
The decision was made by medics to slowly wean Sam off critical care medications, including those that kept him sedated.
Rachel said: “It was the worst thing in the world to see my beloved sweet adorable boy get his seizures back with a vengeance.
“His almost constant seizures, drooling and twitching. It was pure hell and torture to watch and it just broke me.”
“He didn’t have any reactions in his legs or arms, and he didn’t have a gag reflex, which you need to be able to breathe on your own. If you can’t choke, you can suffocate.”
Sam’s latest MRI results, May 5, were “life-shattering”.
Rachel said: “His brain damage had developed and was catastrophic. It was everywhere, in the middle of his brain, around it. It has been compared to super-rapid dementia.
“Any hope of Sam recovering or having any quality of life was dashed.
“It felt like his brain had been eaten away. Whatever it was wouldn’t stop until there was nothing left of it.
“Words just aren’t enough to explain how we felt.
“Medical teams have determined that Sam’s breathing tube, which was maintaining an airway for him, should be removed.
“Sam would make his own decision about whether or not he could survive.
“All I could think about was that I didn’t want my son to be in a condition worse than death, e.g. B. in a minimally conscious state between life and death.”
On the morning of May 8, Sam, who had seizures throughout the night, was given medication to make him as “comfortable as possible” before his breathing tube was removed.
Rachel said: “Time seemed to stand still that morning as we both prepared for Sam and to take out his breathing tube. It was removed around 1 p.m.
“Sam tried for 90 minutes to save his own life but it just wasn’t possible.
“As Sam breathed his last, our world and the lives we knew so well catastrophically shattered into a million pieces all around us.”
Rachel now directs Sam’s Superheroes, which raises awareness of FIRE and funds therapy dog work and activities for at-risk children, among a variety of other initiatives.
An event is being held this Sunday at the Kirkham Community Center on Mill Street from 1pm to 3pm to raise money for children being treated at Blackpool Victoria Hospital.
Rachel wrote: “Sam was a little dream boy. He didn’t really throw tantrums, he loved to please people, loved to make people laugh, loved to play and use his imagination, and had a real thirst for learning.”
https://www.thesun.ie/health/8588422/time-stood-still-baby-boy-died-in-arms/ Time stood still as we whispered to our little boy how much we loved him as he died in our arms