Toddler suffered sudden seizure at tea time before dying days later
‘In two minutes our lives changed forever’: Grieving mother relives horrifying moment her 21-month-old son suffered sudden seizure while eating pizza at tea time – and how she lay next to him as medics switched off his life support machine days later
- Hannah Johnston was having a ‘normal’ day with her son William, 21 months old
- During tea time, he suffered a sudden seizure – and two cardiac arrests followed
- William died a few days later, with his devastated mum and dad Keith by his side
- A postmortem showed he had no underlying health conditions and his death has been described as Sudden Unexplained Death in Childhood (SUDC)
A grieving mother has described the heart wrenching moment she had to watch her ‘healthy’ toddler die ‘with no explanation’ after her family’s life changed forever in just two minutes.
Hannah Johnston, 38, was having a typical day with her precious boy William, 21 months old, who was bouncing around as normal and eating his pizza with his big brother Max.
But just a couple of moments later and out of the blue, as Hannah turned her head to get an ice lolly from the freezer, William had a seizure which would be the start of a shocking and traumatic few days for the family.
William’s seizure was followed by two cardiac arrests before he tragically died a few days later on November 17, 2021.
His parents, Hannah and Keith, 40, struggled to catch up or understand what had happened to their youngest son and were faced with the reality he was going to die – without knowing why.
Hannah has spoken of the devastating moment she and Keith lay either side of William in a hospital bed, telling him the story of his life and singing Snow Patrol’s Chasing Cars lyrics – ‘If I just lay here, would you lie with me and just forget the world’ before their son died.
William’s death was classified as Sudden Unexplained Death in Childhood (SUDC) the sudden and unexpected death of a child between one and 18 years of age, which remains unexplained after a thorough investigation is conducted.
The mother-of-three, from Guilford in Surrey, has spoken to the Mail Online about the trauma her family has experienced in order to raise more awareness of SUDC with the hope that eventually no other parents have to go through the horror they did.
She has shared the last video taken of William on November 13 at 8.59am – showing him playfully climbing onto an office chair and laughing cheekily.
William, 21 months old, was having a typical morning on November 13, 2021 and enjoying playing with his mum and big brother Max
The family’s life changed forever and completely out of the blue after William had a seizure
‘I text my friend at 4.42pm about the fact our kids were having their dinner and two minutes later I called 999. That’s how quickly our life changed,’ Hannah, also mum to Max, seven and Lewis, six, said.
‘I feel there are certain feelings locked inside you that you can only feel when your child is dying.
‘I have never experienced the pain, the trauma, the fear.’
Speaking about the heartbreaking moment William died, Hannah said: ‘Keith was lying on one side of him, and I was lying on the other. I told him the story of his life – everything he loved and everything he did.
‘We didn’t cry, we just wanted that moment for our child, for it to be memorable and special.
‘He died peacefully, and ten minutes later we were allowed to hold him properly. I’ll never get over that moment of holding my dead child in my arms.’
William was always active and full of energy and liked to play with his brothers, his mum said
A post mortem found that William had no underlying health conditions, leaving no answers for the family
Hannah, who used to be in marketing before she became a stay at home mum, explained how the nightmare all started on a very typical family day where William was his usual self, eating and drinking normally and being active.
She said they’d been around three people who had tested positive for Covid that week, so she had been testing her boys’ temperatures just incase.
William’s temperature started at 37.2C on November 13, 2021, and by the end of the day increased to 37.9, so Hannah gave him Calpol as a precautionary measure.
Continuing to describe what began as a unremarkable day, she said: ‘At 4 ‘o’ clock we went to pick up Max from a friend’s house. Max was singing to William in the car.
‘When we got home Max wanted to play with his Lego on the bar stools at the kitchen counter.
‘I made some pizza for Max and William, I had William on his high chair.’
But then within two minutes, everything changed for the family, forever.
Hannah, 38, and Keith, 40, with their children Max, seven, Lewis, six and William who died at 21 months old
‘At 4.20 William was eating his pizza. Max said he wanted an ice lolly so I went round the corner to the fridge, but when I came back I could see William slumped to his right hand side in his high chair.
‘My first assumption was that he was choking because he had been eating. Then I saw his eyes were rolled up and back.’
Hannah said something that had randomly popped up on Instagram a few hours before came into her head at that moment.
‘I had read about febrile seizures on Instagram. A mum had posted about her child – I don’t know how it even came up.
‘I grabbed my phone and rang 999. William was in my arms. I was screaming at them “I need an ambulance, I need an ambulance”. The operator told me they were two minutes away.
‘I was terrified for William but I never in that moment thought he wasn’t going to be OK.’
William was playing Lego with his brother Max not long before he had his febrile seizure
Hannah said she was concerned about what the damage would be for Max – watching what was happening to his brother and seeing his mum so ‘distressed’.
‘I had lost control of my emotions, I felt so fearful. But because it was so sudden I thought “William is going to come out of this,”‘ she said.
‘I don’t think my brain had time to catch up with what was happening. I was on autopilot.’
Hannah said no one in her family has had a seizure, and she didn’t know anything about them. While on the phone to the ambulance they told her to put her son on the floor and let him come out of it alone.
‘When they arrived, Max grabbed me and cuddled me and said “mummy, it’s going to be alright, the doctors are here now.”
‘My little boy who was six years old was taking on an adult role and looking after me.
‘The tears were flowing down my face. But the professionals had arrived and they were going to make him better.
‘I did sob, I really did sob.’
Little William was taken away in an ambulance and suffered two cardiac arrests in total
Three paramedics were working on William, while three policemen who had turned up for support encouraged Hannah to phone her husband.
‘I hadn’t wanted to call him while he was driving but I did. Keith was scared but said that I had to believe it was going to be OK.’
At that point Hannah’s parents Simon and Lin Pott, who’d been out for the day with her son Lewis, also arrived and helped pack a hospital bag as they needed to get going.
William had had a febrile seizure, which terminated after 45 minutes.
Hannah was allowed to touch her little boy but said ‘his eyes were open but he was not responding to me.’
‘They then took him to the ambulance and I will never forget standing there watching the back doors slam shut.’
Hannah waited and about 10 minutes later, just as Software Engineer Manager Keith arrived, a paramedic emerged from the ambulance to deliver the heartbreaking news that William had just suffered a cardiac arrest and they’d need to leave immediately to get to the hospital.
‘I just fell to the floor,’ Hannah said. ‘I couldn’t take it in, it was an out of body experience. An hour ago he was playing Lego with Max.’
William’s parents believed he was going to be OK until they were told by doctors he wouldn’t make it
Hannah says there are no words to describe the grief of losing her little boy – and wants to raise awareness of SUDC to try and prevent the same happening to other families
The ambulance left for the Royal Surrey Hospital, with Hannah and Keith following behind in the police car – but the ambulance stopped again along the way.
‘We were sat in the car not knowing – was he alive? Was he dead?’
And before they knew it the blue lights were back on again.
‘We arrived at the hospital not knowing if he was alive or dead. We were taken into a family room and the paramedic came in and told us he was alive but had had a second cardiac arrest.
‘I didn’t know then, but he had flatlined for 11 minutes.
‘I thought I was going to be sick. I went to the toilet and the nurse told me not to lock the door in case I fainted.’
Hannah and Keith went to see William, who had seven people working on him in a scene Hannah said was like something ‘you see on Grey’s Anatomy’.
‘Our child was fighting for his life. And we couldn’t tell them anything about his medical history because there was nothing to tell.’
William had a CT scan which showed he did not have any bleeding on the brain, before having to be transferred to the specialist Evelina London Children’s Hospital.
‘At that point I still thought he was going to wake up, he was going to be fine. I had to have hope.
‘I was saying to myself ‘we are bringing him home’.’
The mother-of-three and her husband Keith had to watch as doctors fought to keep their son alive
Keith hadn’t seen his son until they got to the hospital, and Hannah describes there being ‘no words’ for how that felt.
‘We were just sitting there watching our worst nightmare happen. Our baby boy with all these adults around him, trying to figure out what was wrong and trying to make him better.
‘There wasn’t much conversation between me and Keith, we just sat there helplessly, trying not to get in anyone’s way.
‘Nurses were offering us food and drink but we were just mute, we couldn’t believe what was happening.’
The next day, November 14, the aim was to keep William stable and let his body rest.
Hannah, who said all the NHS care they had was exceptional, said she and Keith remained at the hospital while her parents looked after Max and Lewis.
Then on November 15, William had an EEG, which records brain activity, before that evening a consultant had a frank conversation with them which they’ll never forget.
‘She said William’s injuries were catastrophic and irreversible. She said his brain activity was minimal,’ Hannah said.
‘I was just gobsmacked and said to her ‘could he die?’
‘She looked me in the eye, so compassionately, and just said yes.
‘My tears were streaming. Until that point I thought we would get him home.
‘Keith was broken. We were just stunned, we didn’t have words. Sitting there at the side of your child, hearing he could die – and no one could tell us why this was happening.’
William, pictured with his brothers, suffered catastrophic and irreversible damage to his brain
William’s heart rate and oxygen levels were going down and doctors knew he was not going to make it
William died, with his loving parents at his side, singing to him, telling him stories and filling him with love
What does SUDC UK say and how can you help?
SUDC UK says: ‘Sudden Unexplained Death in Childhood is the sudden and unexpected death of a child between 1 and 18 years of age, which remains unexplained after a thorough investigation is conducted.
‘This must include: examination of the death scene, a post-mortem and a review of the child and family’s medical history.
‘SUDC is rare and its incidence is approximately 1 death per 100,000 children.
‘SUDC UK is a registered, national charity dedicated to raising awareness, funding research and supporting families affected by Sudden Unexplained Death in Childhood (SUDC).
‘SUDC UK works in collaboration with its global partner organisation, the SUDC Foundation (www. sudc.org) and aims to make SUDC predictable and preventable in the future.
‘Please help us take action by sharing our story in the search for answers, donating, raising funds or learning more at www.sudc.org.uk’
Hannah and Keith were encouraged to step outside for fresh air, but when they did, Hannah said: ‘Everything was so loud.
‘We felt we were stood still and the world was spinning.
‘We wanted to say to people ‘why are you laughing? How are you on the London eye?”
The following day, November 16, Hannah and Keith talked to a neurologist and a consultant who told them William was deteriorating.
His heart rate and oxygen levels were going down and they did not think he was going to make it.
‘We knew this was final and that we had to call our family to tell them the harrowing news,’ Hannah said. ‘
‘It was just excruciating to say it out loud. I’d never wish it upon anyone to have to say ‘my child is going to die.’
‘Keith and I were crying for what we were losing but Keith would say to me – look at what William is losing, and that’s what we always came back to.
‘Keith said you should never have to bury your child – and that’s the truth.’
By the evening, William was transferred to a bed and his parents lay next to him and cuddled him.
‘Snow Patrol’s song Chasing Cars came to my head and I just sang to him – “if I just lay here, would you lay with me and just forget the world,” Hannah said.
‘In that moment I just wanted to forget that he was going to leave me and erase the last three days.’
William’s parents sat with him that night, and spent the following day cuddling, kissing and reading to their little boy, and telling him how much his family loved him until they knew it was time for him to go.
As they lay either side of him telling him stories and giving him love, William passed away.
The parents later had to go through the devastating post mortem, which revealed he had no underlying health conditions, and William’s death was classified as Sudden Unexplained Death in Childhood.
Hannah is sharing her story to raise awareness of SUDC and says more information is also needed on febrile seizures.
‘There is another level of grief when you don’t have an explanation of why your healthy toddler is not here anymore.’
She hopes to one day make SUDC predictable so no other family has to go through what they did.
Source: Read Full Article