Time stood still as we whispered to our baby boy how much we loved him as he died in our arms
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 initially thought to have “run of the mill virus” when he came down with a temperature.
But his condition rapidly deteriorated and, when he suddenly fell into a series of vigorous seizures, was rushed to hospital.
Sam’s parents Rachel and Jim watched on in horror feeling helpless as doctors frantically tried to work out what was wrong.
They put an unresponsive Sam in an induced coma and tried every possible anti-seizure drug over the next seven weeks.
They discovered Sam had an incredibly rare one-in-a-million condition called febrile infection related epilepsy syndrome (FIRES), which is typically triggered by a minor infection such as a cold.
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Tragically, the aggressive and non-stop seizures caused catastrophic brain damage, obliterating any chance that Sam could live a decent quality life.
After seven weeks, Sam’s options ran out and doctors decided to cease treatment and remove his breathing tube.
That morning, May 8, 2021, Rachel said “time seemed to stand still”.
For 90 minutes, nature-loving Sam tried to sustain his own life but was incapable, breaking the hearts of his parents.
Rachel said: “We told him not to be frightened, but to make his way into the light and he would be met by people who loved him so so so much .
“And so our beautiful baby boy passed away in his mummy and daddy’s arm.”
Rachel and her sister Rhiannon have created a lasting legacy for “dream boy” Sam by setting up a charity in his name and fundraising.
My boy’s last words
Writing on the charity Sam’s Superheroes, Rachel said Sam had “a very high temperature, slight sickness and lethargy” over a weekend in March 2021.
She said: “I asked him if he would like a drink of water. He said ‘no mummy’, which I thought odd after having medicine.
“I didn’t know it at the time, but they were the very last words I would ever hear my son speak.
“I sat Sam sat on our kitchen table whilst getting him a cup of water for bed and I noticed he was drooling and blowing bubbles.
“Half laughing and half panicking I asked him why he was blowing bubbles. Sam didn’t respond… [he] collapsed unconscious into my arms.”
Rachel rang 999 and Sam was bluelighted to Derby children’s A&E. In the ambulance he was no longer talking, crying, or reaching out for his mum.
“In the ambulance I knew that something was dreadfully wrong with Sam, call it mother’s intuition,” Rachel said.
Sam suffered two more seizures at the hospital which compressed his airways, and it was decided he needed to be transferred to the Paediatric Critical Care Unit at Queens Medical Centre Nottingham.
Doctors put him into an induced coma and his parents, while distraught, were positive that the seizures could be stopped.
They were reassured there was a “huge protocol of anti-seizure medication” that could be given to Sam.
However, Rachel recalled: “Medications would initially work, but then his brain would find a way round them and he would start to seize again.
“It was utterly devastating and heart breaking. I was terrified, an emotional wreck and in pieces.”
A team of neurologists revealed that Sam had FIRES, which causes a previously healthy child to have back-to-back seizures that continue for 24 hours or more.
The Epilepsy Foundation says children with FIRES have a relatively minor infection with fever two weeks to 24 hours before the onset of seizures.
Roughly one in 10 children with FIRES die, and those that survive have long-term disability.
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 in a best-case scenario.
The mum said: “It was also yet to be understood what was causing these seizures, as it didn’t appear to be an infection such as meningitis, and it wasn’t genetic.
“It was basically like fighting someone blindfold.”
MRI scans showed lesions on Sam’s brain, caused by tissue death, were becoming deeper, leaving “holes” in his brain that would fill with pockets of fluid.
The decision was made by medics to slowly ease Sam off critical care drugs, including those that were keeping him sedated.
Rachel said: “It was the worst thing in the world watching my darling, sweet, gorgeous boy have his seizures return with a vengeance.
“His near constant seizing, drooling, and twitching. It was pure hell and torture to watch and it simply broke me.”
“He had no reactions in his legs or arms, and he didn’t have a gag reflex which you need to sustain breathing on your own. If you can’t gag you can choke.”
Sam’s last MRI results, on May 5, were “life shattering”.
Rachel said: “His brain damage had evolved and was catastrophic. It was everywhere, in the middle of his brain, around the outside. It was likened to having super-fast dementia.
“All hope had been blasted away of Sam recovering, or having any quality of life.
“It felt like his brain had been eaten away. Whatever it was wouldn’t stop until there was nothing left of it.
“Words are simply insufficient to explain how we felt.
Last moments
“A decision was made by the medical teams that Sam’s breathing tube, which was maintaining an airway for him, should be removed.
“Sam would make his own decision on whether he could survive or not.
“All I could think of was that I did not want my son to be in a state worse than death e.g. in a minimally conscious state between life and death.”
On the morning of May 8, Sam, who had been seizuring throughout the night, was given medication to make him as “comfortable as possible” before his breathing tube was removed.
Rachel said: “Time that morning seemed to stand still whilst we prepared both Sam, and ourselves, to take out his breathing tube. It was removed around 1pm.
“For 90 minutes Sam tried to sustain his own life, but it just wasn’t possible.
“When Sam took his last breath, our world and life that we knew so well catastrophically shattered into a million pieces all around us.”
Rachel now runs Sam’s Superheroes, which is raising awareness of FIRES, helping fund therapy dog work and activities for vulnerable children among a host of other initiatives.
This Sunday, an event is being held at Kirkham Community Centre, in Mill Street, from 1pm to 3pm to raise money for children being treated at Blackpool Victoria Hospital.
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Rachel wrote: “Sam was a dream little boy. He didn’t really have 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.”