Baby girl found ‘stiff and blue' after fatal condition struck in the night – heartbroken parents say ‘world fell apart'
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HEARTBROKEN parents say their "world fell apart overnight" when they woke to find their 14-month-old baby girl had passed away during the night.
It was a morning like any other for Enya Burgess, 29, and Scott Stanley, 28, when they went to wake their "cheeky" young daughter, Lily-Anne, on May 7 this year.
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Enya Burgess and Scott Stanley went to wake their daughter, Lily-Anne, on May 7 but realised she wasn't moving
Credit: PA Real Life
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Enya Burgess with her daughter who was just 14 months old when she passed away in her sleep
Credit: PA Real Life
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Scott with Lily-Anne as a newborn baby
Credit: PA Real Life
But they realised with alarm she was 'stiff' and 'blue'.
The couple frantically called for an ambulance but Lily-Anne was sadly pronounced dead.
It was later determined that the tot had died of Sudden Unexplained Death in Childhood (SUDC), leaving her parents with 'no answers'.
Enya, a customer service advisor, recalled: 'It was just a normal Tuesday for us, and the next day our world fell apart, just overnight.
'Tomorrow isn't guaranteed, cherish every moment you can."
The parents - who've been a couple for three and a half years - described Lily-Anne as 'very loving and very cheeky'.
'She was very caring and she liked to share a lot, she had a big heart,' Scott said.
The tot had had no previous health issues.
Scott, an asbestos consultant, said it was a morning like any other on May 7 when he got up for work.
'I went downstairs, made [Lily-Anne's] milk and I went to get her up and ready for nursery.
Sudden Unexplained Death in Childhood explained
"She was stiff on her front and she was blue,' Scott said, becoming emotional.
The couple called an ambulance while Enya ran out of the house to shout for help.
One of their neighbours, an off-duty police officer, was able to start administering CPR to Lily-Anne.
Enya said it was 'craziness' as both police officers and an ambulance arrived at once, before it was confirmed Lily-Anne had died in her sleep at 14 months.
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Lilly-Anne's parents said their world fell apart overnight
Credit: PA Real Life
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The couple called an ambulance while Enya ran out of the house to shout for help
Credit: PA Real Life
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Lily-Anne was a cheeky and loving baby
Credit: PA Real Life
Lily-Anne was taken to King's Mill Hospital in Nottinghamshire for further checks while Enya and Scott followed behind – but they claim they had to sit in the A&E waiting room following their very recent loss.
'It was mayhem – we were sat there for a good half-hour, sitting around other people, wondering what the hell is happening,' Enya said.
The couple said they were then met by doctors before being taken into a side room and questioned about Lily-Anne's health.
'They did some initial checks on her and confirmed there were no signs of struggle, that there was no obvious reason as to why she had passed,' Enya said.
From there, Enya claims she and Scott were moved to another room located 'right next to' the children's A&E waiting room.
'It was literally just a dingy, dark room behind some toilets, and we could hear everything going on,' Enya said.
'We were in shock, it was triggering in a way considering what we were going through.'
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Lilly-Anne's cause of death was confirmed as Sudden Unexplained Death in Childhood (SUDC)
Credit: PA Real Life
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Enya and Scott are fundraising to provide other parents with better bereavement support
Credit: PA Real Life
Over the subsequent days, Enya and Scott wanted to 'spend as much time with Lily-Anne as possible' while she was in the hospital mortuary.
The couple claim they were not offered any counselling or support from a dedicated bereavement team at King's Mill Hospital and there was not a specific area onsite where they could process their loss privately.
They also claim that while bereavement support is on offer at the hospital, it is only for those where a child has died under a certain age – and Lily-Anne was too old for them to receive this service.
Enya and Scott said they were 'lucky' however to have some support from an A&E nurse and a Chaplain at the hospital, who were able to accompany the couple to the mortuary and help them through their difficult time – often staying late outside their working hours to do so.
'We've lost our daughter but fortunately, we had two good people there to help us,' Scott said.
'Not every family is going to get that and without them we would have had nothing – we were just lucky.'
What is Sudden Unexplained Death in Childhood (SUDC)?
SUDC is the unexpected death of a child aged between 1-18 years that remains unexplained after a thorough case investigation is conducted.
This must include; examination of the death scene, performance of a complete post-mortem, and a review of the child and family's medical history
Around 40 children are affected every year in the UK, often going to sleep and never waking up.
At this time, no-one can predict or prevent these deaths; neither parents nor medical professionals.
It's not known why exactly they occur.
Sudden Unexplained Death In Childhood is the fourth leading category of death for children aged one to four years.
Source: SUDC UK
The experience was eye-opening for the couple, prompting them to launch a GoFundMe page to raise money to improve bereavement services at the hospital, to help other families through the 'unthinkable'.
'We want to make these changes to create a lasting legacy for Lily-Anne and to help other parents and families when they are going through the unthinkable.'
Scott added: 'Every hospital should have these services on offer for when you lose a child.
'You need help and support to process the news, and a private place to do so.'
On May 19, Lily-Anne was transported to Great Ormond Street Hospital for Children in London where a post-mortem examination was conducted.
On June 23, the baby's death was officially ruled as SUDC.
Around 40 children are affected every year by SUDC in the UK, often going to sleep and never waking up, according to SUDC UK, a charity dedicated to research and support.
Enya, Scott and their loved ones held a funeral for Lily-Anne on June 6 – although they say they have not processed her death.
'It's hard because we don't have an answer, there was no reason why she died,' Enya said.
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A funeral for Lily-Anne took place on June 6
Credit: PA Real Life
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But Enya and Scott said they're struggling to process their daughter's death
Credit: PA Real Life
The couple's GoFundMe - which aims to enlist a bereavement support team for all at King's Mill Hospital and create a dedicated bereavement suite at the site – has raised over £2,000 so far with a target of £10,000.
'My goal is to get this support in place to help other families in the future,' Enya said.
Dr Simon Roe, Chief Medical Officer at Sherwood Forest Hospitals, said: 'On behalf of the Trust, I want to express my sincere condolences to Lily-Anne's family at this incredibly difficult time.
'While we have a dedicated Bereavement team and plans in place to assist staff in providing advice, guidance and memory-making opportunities to families who have experienced a bereavement, the team doesn't provide ongoing support such as counselling.
'Like other Trusts across the country, bereaved families are signposted to local and national organisations for advice and support.
'We are committed to improving our services and continue to work with our local and regional partners to consider potential developments in relation to bereavement support.
'We are grateful to Lily-Anne's family for wanting to improve others' experiences during what is a distressing time for them and we will continue to work with them to find a suitable way to support our bereavement services as a lasting legacy for their daughter.'
You can visit Enya and Scott's GoFundMe page here.
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