An inquiry into a major event has been opened after a nine-year-old crippled kid was discovered dead in his bed after getting his head stuck.
On October 1 of this year, George Ellis, who was born with Hartsfield Syndrome, died away unexpectedly at his home in Marldon, Devon’s South Hams.
There have only been 18 documented examples of the uncommon illness globally.
Since the disability bed George was given had a “dangerous and huge gap” at the side, his devastated family now believes that his life may have been spared for less than £150.
Although they assert that they have brought up this issue several times, they also allege that they were instructed to fill the space with pillows and blankets.
The family learned George could have been given a specially made infill for his bed, costing £142.99, only after his death, which was brought on by his head being wedged between his mattress and the side of his bed.
The family is now hoping that George’s passing won’t be in vain and that everyone who has been given the same bed as George, a Sidhil Solite, will be given an infill cushion or a new bed as soon as possible.
It’s horrible, remarked Jess, George’s elder sister, who is 23. Although George would undoubtedly pass away sooner than the majority of people, this shouldn’t have happened.
“His death was really needless,” she said. “If it had been a natural decline or a medical issue, we could understand it.
We think George’s life may have been spared for £142.99. We brought up the disparity with several specialists on many occasions, but each time it was ignored.
This cannot happen to anybody else, she continued. Contact your occupational therapist if you own this bed, let them know about George, and let them know you need the infill.
“Every single bed supplier has to be providing these beds with the infill, and they all need to be aware of George’s name.”
“There would be a national outcry if this were a baby in a crib, and the cot would be recalled.” The fact that George was a crippled kid, though, makes it seem less urgent and vital. This must be altered.
George’s death has not yet been the subject of a formal inquiry. Aspiration is listed as the cause of death on his temporary death certificate.
His family is requesting that it be stated that he became stuck after inhaling vomit.
The Torbay and South Devon NHS Foundation Trust has acknowledged that a thorough examination of George’s death is being carried out.
‘We know that George was very much loved, and we would like to convey our greatest sympathies to George’s family and many friends,’ said Deborah Kelly, the trust’s head nurse. During this very trying time, our thoughts are with them.
We have asked George’s family to participate in the serious incident investigation we are conducting into his death.
We will continue to assist George’s family throughout the inquiry, and we will provide them a copy of the investigation’s conclusions when it is appropriate.
We will completely cooperate with any official inquiries and procedures. “George’s death will also be the focus of a coroner’s inquest and other investigations, including a Child Death Review.
“We are unable to speak more at this time due to the continuing nature of these investigations and procedures,” the statement reads.
George, who was born with Hartsfield Syndrome, was described by his family as being the most “wonderful nine-year-old whose grin could light up a room.” They claim that George outperformed all predictions, but the majority of babies pass away at delivery or soon afterwards.
Holoprosencephaly, an anomaly of brain development, and ectrodactyly, a deformity of the hands and feet, are features of this uncommon and potentially fatal disorder.
George suffered the second-severest form of the illness, which left him extremely crippled, in need of a wheelchair, tube-fed, and mute.
Additionally, he was always in danger of choking silently.
Devon Live published a story in 2019 about a fundraising campaign for George to have a trained therapy dog that would not only be a family pet but would also yelp to warn them if George choked quietly at night.
George did get a therapy dog, but he did not get to keep him for very long because of problems that are now the focus of legal action brought by the family.
After recovering from a 10-hour double hip replacement procedure this year, he resumed his studies at Exeter’s Vranch House.
According to Jess, George had a difficult year since he spent the first half of the year in and out of the hospital, but he managed to pull through. He was given a new pressure-sensitive mattress in May or June because he was developing pressure sores.
He was caught in the bed since there was usually a huge gap there. I could have fallen through the opening even if I had just lay on the bed and flipped over.
The bed’s side is also elastic, so even if you lean on it, it will stretch. Just add some cushions and blankets, we were assured, and everything will be fine.
He would grasp at them to play with since he was a wriggly, grabby child. Every day, he found himself in the gap. His occupational therapists (OT) supplied the bed, which had a side rail, roughly five years ago, and his physiotherapists (PT) provided the mattresses. However, when we repeatedly brought this up to his OTs and PTs, they continued deflecting responsibility.
We suspect that the mattresses that were provided for the bed were the wrong ones. I learned of an insert that would have bridged the gap and saved George’s life only after he passed away. We were never told about it, therefore we were unaware that such a thing existed. We would have purchased it ourselves if we had known.
“We are upset and indignant, but if we can only save one life, it would make us feel a little better.”
The government released updated instructions in 2020 for securely maintaining and using bed rails. It specifies that there shouldn’t be more than a 6 cm space between the side of a bed and the mattress. The gap, according to George’s relatives, was at least 15 cm wide but might perhaps be wider since the side was flexible.
In the instruction manual for its Solite community care bed line, Sidhil cautions that using the wrong size and kind of mattress ‘may lead to an entrapment and/or falls danger’.
Care must be taken while setting and adjusting bedside rails to make sure that any gaps between the bedside rails, mattress, or bed frame will not enable the occupant’s head or torso to get trapped.
A disclaimer that reads, “Sidhil cannot be held liable for any damage or event that relates to the use of any product combinations not authorized by Sidhil Ltd.” is included in the handbook. The caregiver is in charge of making sure the goods are properly chosen and fitted and that the product combination is suitable.
Such a horrible accident; it’s really awful to read this, said Mark Thompson, operations director at Drive DeVilbiss Healthcare Ltd. in Sidhil Business Park, to Devon Live.
I’m sorry, but I would anticipate that the coroner would identify our firm as an interested party and would not want us to speculate in the media.
To enable George’s family to give him the proper sendoff he deserves, an online fundraising campaign has been started. It has raised £2,500 thus far.
South Devon will host his funeral near the end of October.