Charlie Gard’s parents tell how they finally got to bring their baby boy home — and of their terror when they realised how few rights they had over his life
TRAGIC Charlie Gard’s parents have spoken of his final moments – and of their terror at realising how few rights they had as parents over his life.
Connie Yates and Chris Gard also revealed that after his death they were finally granted their wish to bring their beloved boy home.
But the couple are still in shock at how powerless they have felt ever since Great Ormond Street Hospital launched its first legal bid to turn off their son’s life support system in February this year.
Mum Connie said that she thought of her family as tiny fish at the mercy of the huge ones circling at the hospital.
And she said it was terribly intimidating and stressful to be at odds against such a powerful and highly respected hospital.
She added: “It’s equally terrifying to realise just how easily the rights of parents can be snatched away.”
Charlie died on Friday last week — one week before what would have been his first birthday — and after the last of his parents’ legal bids to get him treatment in the US failed.
His mum said of the nightmarish moment it was ruled that he would die: “Chris and I were crying, our legal team were crying, because we knew this was the end.”
They only had one wish left — to bring their boy home to die.
But the High Court turned down their request when hospital bosses said intensive care kit would not fit through the door of their flat.
So instead they made the most of the last hours Charlie would have at the hospital where they had spent the past nine-and-a-half months, before he was moved to a hospice.
Connie and Chris pushed a bed against their son’s and lay beside him, not sleeping in order to enjoy every single moment they had left with him.
Connie, 31, recalled that they cuddled him and told him how much they loved him, and took photos of his little hands and feet.
They were determined never to forget how beautiful he was.
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Dad Chris added that when saw Charlie in his little bed with his beloved toy monkeys, the couple wept yet again.
Speaking to journalist Alison Smith-Squire in the Daily Mail, Charlie’s mum recounted how she emailed the judge in a last-minute bid to get a few more moments with her son, just a few hours more before he was taken to the hospice to have his life support switched off.
Even a tiny scrap of extra time would do, she begged.
But the judge emailed back saying Great Ormond Street Hospital (GOSH) would not agree.
Charlie was taken out of intensive care and transported by ambulance to a hospice 45 minutes away.
His parents were made to follow behind in another car in which they were flanked by security guards.
They were informed that he had just five hours left before the ventilator that kept him alive would be switched off.
The little family desperately tried to make those few hours count.
Postman Chris, 33, told how they took Charlie for a walk in the park, and had plaster casts taken of his feet and hands.
Then he was dressed in a babygrow with stars on it. In a flash, the five final hours were gone and a woman hospice staffer said the life support system would be switched off in five minutes.
Connie and Chris lay weeping on the bed with Charlie between them, telling him of their everlasting love and their pride.
Then a staff member disconnected the ventilator that was keeping him alive.
Charlie opened his eyes and gazed at his parents for one last time, then closed them and passed away.
The couple had been warned it might take five or six minutes for him to die. In fact, it was 12 minutes before his heart stopped beating.
Chris laid his head on his son’s chest so he could feel his last heartbeats.
He said: “It was typical of our little fighter, our warrior, to keep fighting until the very end.”
Charlie’s death brought the end to an agonising legal drama that began in February when the couple refused to have his life support withdrawn.
Charlie had been just three months old when he was found to have an incredibly rare genetic condition called mitochondrial depletion syndrome, which gradually starved his vital organs.
A US doctor believed he could help the baby with experimental treatment, but eventually legal wrangles went on until little Charlie would have been too weak for it.
Throughout the legal fights little Charlie had become public property — but in death he was finally just his parents’ own little boy again.
Connie, who used to work as a carer, revealed that hospice staff allowed them to take his body home in a temperature-cooled “cuddle cot” that would let them have a couple more days with him.
When they got home with their precious lad, it was the first time the couple had been back at their flat in Bedfont, West London, since Charlie went to hospital in October.
They had stayed at family accommodation near the hospital ever since.
The couple put him in the cot next to their bed and spent the next few days lying next to him.
His mum said: “Charlie was still warm as we carried him through our front door.
“We had got our last wish to bring him home, but Charlie was no longer alive.”
They spent the precious, final few days gazing at the little face that for the first time in months was not taped up to breathing tubes.
It looked like he was sleeping, and it looked like he was perfect.
Charlie’s parents are now planning his funeral, and have set up the Charlie Gard Foundation to help other kids.
And they say they have not ruled out having another child.
Connie said: “Charlie brought such joy and love into our lives that we can’t possibly imagine not having a family in the future.”
'Sometimes fighting isn't the right thing to do any more'
A MEDIC who treated Charlie Gard has spoken out about the child’s parents’ agonising battle to keep him alive.
The unnamed worker was part of the team at Great Ormond Street Hospital that cared for Charlie day after day as he lay in intensive care. And the staffer was also one of the medics thrown into conflict with the boy’s parents Chris and Connie – and with the wider world – when the decision was made to let him slip away.
Speaking to The Guardian, where this article first appeared, the staffer argues that Charlie had to be allowed to rest in peace.
"I’VE been part of a team of 200 nurses, doctors and consultants who cared for Charlie Gard, not just doing all the medical interventions he required but also washing him, cuddling him, propping up his toys around his cot.
"Like all of the staff who work in our unit, I loved this child to bits. But it got to the point where there was nothing more we could do.
"I know everyone working in intensive care would agree with me when I say that every child who comes through this unit is loved, but there are a few who take a piece of your heart with them when they leave.
"Some who have wonderful parents, some who have sad stories, some who you just work so hard to save that when you can’t, it hurts your soul just a little bit.
"It’s not just our job, it’s our whole reason for being to keep these children alive . . . to give them back to their parents with as great a quality of life as we possibly can.
"We miss breaks, we stay late, we spend our days off researching and studying so that we can be better at what we do. We cry on the Tube when we’re not winning. We dream of nothing else.
"Have you ever really met a nurse or doctor who wants a child to die?"
It's our legal and moral obligation to stand up and say when enough is enough
Medic who treated him
"We didn’t want to lose Charlie, and we didn’t want his mum and dad to be without him, but it’s our job, our legal and moral obligation, to stand up for him and say when we think that enough is enough.
"There are few people in the world who are more injured by doing that than someone who has chosen to work in intensive care. It’s not in our nature to stop fighting, but sometimes it’s just not the right thing to do any more.
"My colleagues and I worked our hardest, tried everything, fought so hard for this family but there was nowhere else to go. It was obvious to all those people who treated him.
"We gave him drugs and fluids, we did everything that we could, even though we thought he should be allowed to slip away in his parents’ arms, peacefully, loved.
"We didn’t do this for Charlie. We didn’t even do it for his mum and dad.
"Recently, we did this for Donald Trump, the Pope and Boris Johnson, who suddenly knew more about mitochondrial diseases than our expert consultants.
"And we did it for the keyboard warriors who thought it was OK to write about the “evil” medical staff at Great Ormond Street, even though we were still there next to Charlie, caring for him as best we could, as we always had.
"We did it with every fibre of our being telling us that it was wrong, we should stop.
"But we couldn’t.
"Over the last few weeks, parts of the media and some members of the public turned a poorly baby’s life into a soap opera, into a hot legal issue being discussed around the world.
"Working in the intensive care unit is like living in a bubble at the best of times, but this went too far. I used to be proud to tell people I work here, but not now. Even my friends have asked me: “Why are you trying to kill this child?”
"That’s not what we do at GOSH. It’s not why we go into care. It upset my colleagues – I’ve watched them be affected.
"The case has also had an effect on other families here.
"Parents are nervous, they worry that we might not do the right thing for their child.
"That worry is not based on the care we are giving, it’s based on what you have been saying about medical staff you have never met.
"So next time you feel like commenting on social media about how awful we are, please try to remember how hard we work to stop children from dying every day. Please try to remember that Charlie’s parents read those comments, please try to remember Charlie – who chose none of this.
"You have contributed to the family’s pain, you have been fighting a cause you know nothing about. It’s not been helpful to anyone.
"You will forget about Charlie, you’ll carry on with your life. His parents will live with this for ever.
"They will go over and over whether they made the right choices for their beautiful baby, whether they were strong enough to make those choices amid the fury of you watching a drama unfold from behind your screen.
"The parents’ pain will be unimaginable, their loss immeasurable and incomparable. But we will live with this for ever, too."