Probe launched into death of nine-year-old disabled boy who was found dead in his bed after his head became trapped
- George Ellis, 6, was born with Hartsfield Syndrome – a rare 18 cases worldwide
- He passed away at his home in Devon, on October 1 after his head got trapped
- George’s family believe he could’ve been saved by a new bed – for less than £150
A serious incident investigation has been launched after a nine-year-old disabled boy was found dead in his bed after his head became trapped.
George Ellis, who was born with Hartsfield Syndrome suddenly passed away at his home in Marldon in the South Hams, Devon, on October 1 this year.
The rare syndrome has only 18 recorded cases of it worldwide.
George’s heartbroken family now believe that his life could have been saved for less than £150 – as the disabled bed he was provided with had a ‘dangerous and large gap’ at the side they say.
George Ellis, who was born with Hartsfield Syndrome suddenly passed away at his home in Marldon in the South Hams, Devon, on October 1 this year
George’s heartbroken family now believe that his life could have been saved for less than £150 – as the disabled bed he was provided with had a ‘dangerous and large gap’ at the side they say
Although they claim to have raised this concern several times, they also say there were told to fill the gap with pillows and blankets.
It was only following his death, caused by his head becoming trapped between his mattress and the side of his bed, that the family discovered George could have been provided with a specially designed infill for his bed, priced £142.99.
The family now hope that George’s death won’t be in vain, and that every person who has been issued with the same bed George had – a Sidhil Solite – is urgently supplied with an infill cushion or a new bed.
George’s older sister, Jess, 23, said: ‘It’s horrific. We always knew George would probably die younger than most people, but it shouldn’t have been like this.
‘If it had been a natural decline or he was ill we could accept that, but his death was very unnecessary.
‘We believe £142.99 would have saved George’s life. The gap was an issue we raised several times with various different professionals and it was dismissed every time.’
She added: ‘This cannot happen to anyone else. If you have this bed contact your occupational therapist and tell them about George and tell them you need the infill.
‘Every single bed provider needs to know George’s name and they need to be supplying these beds with the infill.
It was only following his death, caused by his head becoming trapped between his mattress and the side of his bed, that the family discovered George could have been provided with a specially designed infill for his bed, priced £142.99
‘If this was a baby in a cot, there would be national outrage and the cot would be recalled. But because George was a disabled child, it is somehow less important and urgent. This needs to change.’
An inquest has not yet been officially opened into George’s death. On his interim death certificate, the cause of death has been given as aspiration.
His family are seeking to have it added that this was due to inhaling vomit while he was trapped.
Torbay and South Devon NHS Foundation Trust has confirmed it is conducting a full investigation into George’s death.
Deborah Kelly, the trust’s chief nurse, said: ‘We know that George was very much-loved and we would like to express our deepest condolences to George’s family and many friends. Our thoughts are with them at this very difficult time.
‘We are undertaking a serious incident investigation into George’s death and have invited his family to be involved in the investigation.
‘We will continue to offer to support to George’s family throughout the investigation and a copy of the investigation findings will be shared with them in due course.
‘George’s death will also be the subject of a coroner’s inquest and other investigations, including a Child Death Review and we will fully co-operate with all formal investigations and processes.
‘Due to the ongoing nature of these investigations and processes we are unable to comment further at this time.’
The family now hope that George’s death won’t be in vain, and that every person who has been issued with the same bed George had – a Sidhil Solite – is urgently supplied with an infill cushion or a new bed
George, described by his family as being the most ‘amazing nine-year-old whose smile could light up a room’, was born with Hartsfield Syndrome. Most children die at birth or shortly afterwards, but George exceeded all expectations, they say.
The life-threatening rare condition is characterised by holoprosencephaly, which is an abnormality of brain development, and a malformation of the hands and feet called ectrodactyly.
George had the second most severe type of the condition which meant he was severely disabled and required a wheelchair, was tube fed and was unable to talk.
He was also at constant risk of silent choking.
In 2019, Devon Live reported on a fundraising appeal for George to have a trained therapy dog to not only be a family pet but would bark to alert them if George silently choked at night.
George did get his therapy dog but due to issues which have now become the subject of legal proceedings instigated by the family, he did not get to keep him for long.
This year he underwent a 10-hour double hip reconstruction operation of which he recovered from and had been back attending school at Vranch House in Exeter.
Jess recalled: ‘This year has been a tough one for George because he was in and out of hospital for the first half of the year but he got through it fine. As he was getting pressure sores he was provided with a new pressure sore mattress in around May or June.
‘There was always a massive gap in the bed and that’s what he got stuck in. Even if I had laid on the bed and rolled over I could have fallen through the gap.
‘The side of the bed is also stretchy so even if you lean on it then it stretches. We were just told to fill it with blankets and pillows and it would be okay.
‘He was quite a grabby and wriggly boy so he would grab at them to have fun with. He ended up in the gap every day. When we mentioned it several times to his occupational therapists and physiotherapists, they kept passing the buck because OT provided the bed, which had a side rail, about five years ago and physiotherapists the mattresses.
George’s older sister, Jess, 23, said: ‘It’s horrific. We always knew George would probably die younger than most people, but it shouldn’t have been like this. ‘If it had been a natural decline or he was ill we could accept that, but his death was very unnecessary’
‘We think we may have been given incorrect mattresses for that bed. It was only after George died that I found out online about an insert that would have filled the gap and saved his life. It had never been mentioned to us so we don’t know something like that existed. If we knew we would have bought it ourselves.
‘We are angry and heartbroken, but if we can help just save one person’s life we will feel a bit better.’
In 2020, the government published new guidance on managing and using bed rails safely. It states the gap between the side of a bed and the mattress should be no more than 6cm. George’s family estimate the gap was at least 15cm but could even be more as the side was flexible.
Sidhil’s instruction guide for its Solite community care bed range warns that mattresses used must be the correct size and type because incorrect mattress specification ‘could lead to an entrapment and/or falls hazard’.
It adds: ‘Care must be taken when positioning and adjusting bedside rails to ensure that any spaces between the bedside rails, mattress or bed frame will not allow entrapment of the occupant’s head or body.’
In the guide, it also issues a disclaimer that states: ‘Sidhil cannot be held responsible for any injury or incident which relates to the use of any product combinations not approved by Sidhil Ltd. It is the carer’s responsibility for selecting and fitting the products correctly and ensuring that the product combination is compatible.’
Mark Thompson, operations director of Drive DeVilbiss Healthcare Ltd at Sidhil Business Park, said to Devon Live: ‘Such a terrible tragedy; it’s incredibly sad to read this.
‘I am sorry but I would expect the coroner to name our company as an interested person and that the coroner would not want us to speculate in the press.’
An online fundraiser has been launched to help George’s family give him the fitting farewell he deserves. So far it has raised £2,500.
His funeral will be held towards the end of October in South Devon.
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