Charlie Gard's parents: Our last hours with our son

The cot was lined with cuddly toys, the bedroom curtains pulled half-way to allow the gentlest of rays to spill pools of sunlight on the carpet. 

Now and then, a smattering of squally summer rain hit the window — the only sound to interrupt the silence within.

Inside the cot lay a beautiful baby boy. Dressed in a pastel-blue sleepsuit, his hair combed and his chubby face bath-time fresh, this was Charlie Gard, finally at home, where his parents, Connie and Chris, fought so hard for him to be.

Of course, this represents no victory for anyone.

Charlie, who had passed away days earlier, was lying in a specially chilled ‘cuddle cot’, allowing his family to spend more time with him before he was taken to a funeral parlour.

A gentle goodbye: Chalie with Mum and Dad holding his hands, Charlie’s tender last moments before his ventilator is withdrawn

A gentle goodbye: Chalie with Mum and Dad holding his hands, Charlie’s tender last moments before his ventilator is withdrawn

The little boy actually took his last breath at 3.12 pm last Friday. A private moment with only his parents at his side. His respirator was withdrawn and he slipped away 12 minutes later.

A quiet end to a life that had become so public.

‘Once home, it was lovely to sit and watch him, lying there like any other baby,’ says Connie. ‘Not surrounded by equipment and machinery, without anything obscuring his lovely face. To just see our Charlie, at home, sleeping in his cot where he should be.’

Charlie, the baby whose name is recognised around the world, whose plight engaged — and divided — religious and political leaders, was once more the chubby baby so loved and wanted by the parents who fought so fiercely for him.

Had he lived, Charlie would have turned one yesterday.

His life — and his illness — drew us all in, from the Pope and the President of the United States to the man and woman in the street.

Why? Because the controversies surrounding Charlie’s life — and ultimate death — encapsulated a dilemma we all find almost impossible to face: who should choose when to end a life?

Blissfully unaware of the battle to come: A treasured and previously unpublished picture of Charlie, aged just six weeks

Blissfully unaware of the battle to come: A treasured and previously unpublished picture of Charlie, aged just six weeks

His plight raised profound questions about the rights of parents, the right to life and the greatest question of all: should the opinion of doctors always override the instincts of parents who strongly believe their child has a chance of a good life — no matter how limited that might actually be?

There has been anger, and accusations of exploitation. There have been vicious hate campaigns waged against hospital staff and lawyers — and against even the parents themselves.

There were interventions from American anti-abortion evangelists. And there were tears. So many tears. It’s easy to forget sometimes that Charlie started out as a much-loved baby boy born to ordinary, working-class parents from South-West London, who wanted only for their son to grow up like any other child.

To learn to ride a bike, to read and write, to go to school, to make friends — to fall in love one day and maybe enjoy his first pint with his dad.

But poor Charlie never even got to take his first steps.

Aged three months, he was found to have an incredibly rare genetic condition called mitochondrial depletion syndrome, which gradually starved his vital organs and muscles of energy.

So rare is his strain of the disease that he is believed to have been only the 16th sufferer in the world.

Nestled next to his monkey toys, a touching moment between father and son just before leaving Great Ormond Street

Nestled next to his monkey toys, a touching moment between father and son just before leaving Great Ormond Street

Rarer still were the chances of both his parents being carriers of the gene, and actually meeting, falling in love and choosing to have a baby together. Had they met anyone else, they probably still wouldn’t know of the terrible assassin hiding in their DNA.

Charlie had been hospitalised at Great Ormond Street Hosptial (GOSH) since last October, when he first fell gravely ill. His plight only came to public attention in March, when Chris Gard and Connie Yates challenged Great Ormond Street’s wishes to withdraw his life support and allow him to ‘die with dignity’. 

His parents wanted to take him to America to undergo experimental treatment they believed could save his life, if not cure him.

The stalemate threw into sharp focus how morally tangled and ultimately fragile are the rights of parents over the fate of their children when pitched against the might of the State.

In their first interview since Charlie’s death, the couple describe that David and Goliath struggle as ‘truly terrifying’.

‘I visualised Great Ormond Street as a big fish and Charlie, myself and Chris as tiny little fish,’ says Connie.

Connie Yates with her son on March 2017

Connie Yates with her son on March 2017

‘It was terribly intimidating and stressful to find ourselves up against such a powerful hospital and one which, in many people’s eyes, can do no wrong. It’s equally terrifying to realise just how easily the rights of parents can be snatched away.’

What ensued was a bitter, months-long legal campaign: two High Court hearings, one Court of Appeal hearing, another at the Supreme Court and yet another at the European Court of Human Rights.

It all ended abruptly at the High Court in London two weeks ago, when evidence from recent MRI muscle scans of Charlie’s body were presented which stated, conclusively, he was beyond all help.

This was the moment that all hope, which had carried the parents through so many traumatic days and nights, was lost. Connie, 31, and Chris, 33, finally gave up the fight.

‘It was truly terrible,’ says Connie. ‘Chris and I were crying, our legal team were crying, because we knew this was the end.’

Chris says: ‘We rushed back to the hospital and, when we saw Charlie in his bed, his little toy monkeys in his hands, our hearts broke. We sobbed at the hopelessness of it all.’

But the fight wasn’t over. A day later, with Chris remaining at Charlie’s bedside, Connie returned to the High Court in a bid to fulfil their final wish: that Charlie go home to die.

‘We simply wanted a few days of tranquillity with him,’ she says. ‘After everything, we didn’t think it would be too much to ask.’

Sadly, it wasn’t to be. After Great Ormond Street claimed intensive care equipment wouldn’t fit through the door of the parents’ ground-floor flat, Chris and Connie reluctantly agreed to allow Charlie to die in a hospice.

With a transfer to the hospice booked for 7am on Friday, Connie and Chris had less than 24 hours to say goodbye to their son.

‘We pushed another bed against his bed and Chris and I lay either side of him,’ says Connie. ‘We didn’t want to sleep because we wanted to savour every moment with him.

‘We cuddled him and told him how much we loved him. We took photos of his hands, feet, fingers and toes. Every second with him was precious. We never wanted to forget how beautiful he was.’

In the early hours of Friday morning and panic-stricken that Charlie had just hours to live, Connie emailed the judge.

‘I begged for more time — even a little. I cannot begin to describe the feelings you have as a mother knowing your child is about to die. I hoped for some compassion, but he emailed back saying it simply wasn’t possible because GOSH didn’t agree.’

At 6.35am, hospice staff arrived to take Charlie away.

‘Leaving the intensive care unit where we’d lived for nine-and-a-half months felt surreal,’ says Connie.

Connie & Chris seen taking Charlie for a walk in hospice park shortly before he died

Connie & Chris seen taking Charlie for a walk in hospice park shortly before he died

‘The photos of Charlie, the days and nights we’d spent there at his bedside, the rushing back to see him from the hearings. It held so many memories. On the one hand, I longed to leave the hospital: we didn’t want Charlie to die there. And yet, a huge part of our lives was coming to an end in such a tragic way.

‘We longed to be in the ambulance with Charlie but, instead, flanked by security guards, we had to follow in a car.

‘We were so broken — too upset in our own individual world of grief — to protest or even speak to each other.’

After a 45-minute drive, Charlie was transferred to a room at the hospice. The couple had five hours before he had to die.

Chris says: ‘We took Charlie out for a walk in a pushchair in the hospice park. We had little plaster of Paris moulds taken of his feet and hands with ours.’

Connie recalls: ‘We dressed him in a Babygro with stars on it. He looked so beautiful and innocent. The hospice staff popped in. Those last five hours had flashed by. A woman said the moment we dreaded would happen in the next five minutes.

‘Chris and I were both crying. We laid on the bed with Charlie between us, each of us holding a hand. We were both telling him we were there, we loved him, how proud we were of him.

‘A staff member disconnected the ventilator so that the tube was still in Charlie’s nose, but it wasn’t working.


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