Emma left her daughter Sophie playing happily when she went to work. Hours later, she was facing a nightmare...
Placing my daughter Sophie in her cot, I planted a tender kiss on her forehead.
‘Night, sweetheart,’ I whispered.
Sophie was 11 months old. She was a happy soul, always smiling and laughing.
Her big brother Charlie, two, loved making her giggle.
‘Peekaboo!’ he’d say, pulling his hands away from his face, and Sophie would laugh her head off.
That night, once Charlie was also in bed, my husband Gareth, 49, and I curled up on the sofa before eventually turning in.
Around 5am, we heard a strange grunting sound coming from Sophie’s cot beside us.
‘It must be a seizure,’ I said, leaping to my feet.
Sophie had suffered from atypical absence seizures since she was five months old.
Sometimes she needed to go to hospital, but most of the time she’d just rest at home.
‘Come here, sweetheart,’ I said, scooping her up.
Sophie’s convulsing eventually subsided.
She seemed all right in herself, so we gave her some Calpol for her raised temperature, and settled her back down again.
‘I’ll call the GP when they open,’ Gareth said. ‘Just to be on the safe side.’
Later that morning, I headed off to work. But a few hours later, Gareth called me.
‘Sophie’s having cluster seizures,’ he told me. ‘We’re at St Peter’s Hospital.’
‘Keep me updated,’ I said.
A little while later, my phone pinged with a text from Gareth.
It’s all gone horribly wrong, it read. Get here now.
My heart plummeted.
Please let my baby be OK, I thought.
I sped to the hospital, where a nurse took me aside.
‘Brace yourself,’ she said.
As I was led into the room where Sophie was, I stopped dead in my tracks.
'There's nothing else we can do'
A doctor was performing CPR.
‘What’s going on?’ I asked Gareth.
He looked like he was in shock.
After 15 minutes, the doctor stopped.
‘There’s nothing else we can do,’ she said.
‘Can’t you keep going?’ I asked, horrified.
‘I’m so sorry,’ she replied. ‘She’s gone.’
My world stopped. I couldn’t believe what I was hearing.
It was just three weeks before her first birthday, we’d planned a party… She couldn’t be dead.
Staff left the room to give us privacy.
Numb with shock, neither of us could speak.
We just sat with Sophie, stroking her face and hands. She looked like she was sleeping.
‘What happened?’ I finally asked Gareth.
He told me that Sophie had suffered two seizures at the GP surgery.
The first one was short, but the second was a prolonged cluster seizure.
‘The GP gave her diazepam and called an ambulance,’ Gareth said. ‘But by the time she was at A&E, the clusters were getting further apart. It seemed like she was coming out of them.’
A doctor at the hospital had suggested administering phenytoin — a drug used to prevent some seizures.
Phenytoin had to be injected slowly over a prolonged period, so nurses had measured out the dose, before the doctor had begun to administer it by hand.
But after 14 minutes, Sophie began to vomit. Then she went into cardiac arrest.
Staff had then rushed into the room and begun CPR.
‘I can’t believe our girl’s gone,’ I whispered.
'It was a serious, but basic error'
‘Sophie called me Daddy this morning,’ Gareth said. ‘That’s the first time she said it. Now she’ll never say it again.’
All I could do was squeeze his hand, as tears streamed down my face.
When our family eventually arrived at the hospital, they were as distraught as we were.
‘Charlie,’ I remembered suddenly. ‘Someone needs to pick him up from nursery.’
‘I’ll go,’ Gareth said. ‘I can’t stay here any longer.’
I had no idea how we were going to break the news to Charlie. He doted on Sophie.
How could we explain to him that his little sister wasn’t going to be coming back?
Gareth was escorted home by police, and a few hours later I was escorted home too.
When we reached my front door, they followed me inside.
‘What do you want?’ Gareth asked them.
‘This is a crime scene,’ an officer began.
‘A what?’ I said.
‘We have to check for evidence,’ he continued.
‘Evidence of what?’ I asked.
They didn’t explain.
Instead, they stripped Sophie’s cot and took her clothing and bedding, along with other items like bottles and toys, and put them in evidence bags.
We thought the police had simply escorted us home as an act of kindness.
Now it felt like we were being accused of something.
‘We’ve done nothing wrong,’ I tried to explain, as we looked on, completely stunned.
Two days later, the police wrapped up their investigation at our home.
Whatever they were looking for, they hadn’t found it.
But it was clear to us that something had gone very wrong.
We couldn’t understand how Sophie had died.
On what would have been Sophie’s first birthday, we spent time with
her at the funeral home.
It was utterly devastating.
When we were finally allowed to lay our little girl to rest two weeks later, we released balloons and played Somewhere Over the Rainbow.
Meanwhile, we still had a lot of unanswered questions.
‘I just want to know why she died,’ I sobbed to Gareth one day. ‘Is that too much to ask?’
An initial postmortem examination concluded that Sophie had passed away from a heart attack.
But not long after her funeral, a toxicology report uncovered the full truth.
Sophie had died from a fatal overdose of phenytoin.
I was appalled.
‘They gave her too much of the seizure drug?’ I raged through my tears.
‘We’ll get to the bottom of it,’ Gareth assured me.
An inquest was opened into Sophie’s death, but it was three and a half years of a horrible limbo before there was a ruling.
Finally, a coroner concluded that our precious girl had been let down by a gross failure to provide basic medical care,
after being injected with five times the required dose of phenytoin.
The coroner confirmed that although the correct dosage of 200mg had been requested,
it was discovered that 1,000mg of undiluted phenytoin had been drawn up into the syringe.
‘If this error had not been made, Sophie would not have died when she did,’ the coroner told the inquest. ‘It was a serious, but basic error.’
The coroner also concluded that, in her opinion, Sophie hadn’t even needed phenytoin.
I sat there shaking my head, trying to take in her words.
Beside me, Gareth broke down in tears.
Our beautiful baby had died because of a basic error, and been given a drug she didn’t need.
What a waste of a life.
Ashford and St Peter’s Hospitals NHS Foundation Trust were required to conduct a review and implement all recommendations.
It wasn’t enough in my eyes.
The coroner found that two nurses had been jointly responsible for miscalculating the dose.
So why weren’t they facing criminal prosecution?
In time, I heard that the police had come to our home and taken Sophie’s things, because the hospital had suggested we’d mistreated her.
It was a terrible thing to accuse us of — we had loved our daughter like nothing else.
Instead of targeting us in our home, police should have been looking into the nurses who got the dosage wrong.
Now, we’re campaigning to have those nurses face criminal charges.
It won’t bring our little girl back, but justice should be done.
Sophie was the light of our lives, and we grieve for her every single day.
Emma Burgess, 44,
Chertsey, Surrey
● Suzanne Rankin, Chief Executive
of Ashford and St Peter’s Hospitals NHS Foundation Trust, said: ‘We are deeply sorry that catastrophic errors in our care led to Sophie’s tragic death.
I understand that nothing can take away the pain and grief of Sophie’s death and, whilst we sadly cannot change what happened, we want Sophie’s family and other patients and carers to know that we are determined to learn when things go wrong.
Since 2016 we have made significant improvements to the administration of phenytoin in all situations... Today our thoughts are with Gareth and Emma Burgess and their family.’