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A gentle goodbye: Chalie with Mum and Dad holding his hands, Charlie’s tender last moments before his ventilator is withdrawn

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 His respirator was withdrawn and he slipped away 12 minutes later.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?

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

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 Hospital (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

‘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

‘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.

‘Charlie opened his eyes and looked at us one last time and closed them before he passed away. We were warned it might take five or six minutes for him to die. But it took 12 minutes until his heart stopped beating.’

Chris, who had laid his head on his son’s chest so he could hear his very last heartbeats, adds: ‘It was typical of our little fighter, our warrior, to keep fighting until the very end.’

Charlie's parents, Connie and Chris, 33, fought a lengthy and emotional legal battle to take their severely ill baby son to the US for treatment

A nurse removed the tube and sticky tapes that had kept it in his nose.

‘I held him in my arms. It was amazing to see him without the ventilator. Through sobs, Chris and I marvelled at how beautiful our son was.’

A member of staff asked if they would like to take Charlie home in a temperature assisted ‘cuddle cot’, which would allow them to have their son home with them for a few days. ‘Before, I’d always thought maybe taking your child home in such a cot would be rather odd.

‘But ultimately, it felt perfectly natural to leave the hospice with Charlie and take him with us.’

The last time they’d seen their flat was in October last year when he became ill and Connie had rushed him to hospital. Once their son was transferred to GOSH, they never went home. Relatives picked up clothes and they stayed in special accommodation close to the hospital.

‘Charlie was still warm as we carried him through our front door,’ recalls Connie. ‘The moment was very emotional.

‘We had got our last wish to bring him home, but Charlie was no longer alive.’

While relatives had tidied up hastily abandoned coffee cups, everything else in their flat remained as it had been since last October.

Precious moment: A previously unseen picture of Charlie Gard shows the then healthy newborn sleeping next to his napping mother Connie Yates, 31, just hours after his birth on August 4 last year

‘The “Congratulations On Your Baby Boy” cards still lining the front room made us weep,’ says Chris. ‘Everywhere we looked were remnants of those happy times with a newborn Charlie. His clothes, toys, bottles . . .

‘Although it was so upsetting, at least he was home — finally back where he belonged. It felt like he was ours again.’ For a few days, Charlie laid in a cot next to their bed with three monkeys — Chris, Connie and Charlie each have one — and his tiny bear, called Norbert.

‘Soon, it will be time for Charlie to make his final journey,’ says Connie, explaining that she and Chris are still finalising funeral arrangements for his burial.

‘In those precious days, he looked even more beautiful without the tapes on his face. He looked like a perfect, sleeping baby.’

While the guns in this most epic of battles have finally been silenced, a deep unease remains in the quiet left behind.

Mercifully, few parents will ever experience what Connie and Chris did: to discover how ultimately flimsy the rights of parents are. To realise they are going to have to fight tooth and nail for what most of us take for granted.

Few people cannot have helped but wonder — witnessing the wan, tear-stained faces of the parents climbing the steps to the High Court every day to face the might of the cleverest legal and medical minds in the world — how facing up to that vulnerability actually feels.

Yet, despite the bitter outbursts in court, the volley of words and paperwork, both Connie and Chris say they are incredibly grateful to all the staff at Great Ormond Street for keeping their son alive and giving him such excellent intensive care.

Connie is adamant that, on a daily basis, there were no issues between them and staff, despite the ongoing court cases.

Mr Gard poignantly brought one of his son’s two toy monkeys to each court appearance during their battle

‘Charlie was the most stable child in intensive care,’ she says. ‘There was no evidence he was in pain or suffering, so he hardly needed to see a doctor. That was part of the problem — being told by doctors who rarely saw Charlie that he didn’t respond when we knew he did respond to us.

‘But nursing staff were wonderful. There was no feeling of “us” and “them”. For example, nurses and a doctor at GOSH even volunteered to care for Charlie when we were trying to get some extra time with him before saying goodbye.

‘Many decisions with hospital chiefs simply went ahead without us being there.’ She points out that it was GOSH who took them to court, when they refused to agree to Charlie’s life support being withdrawn.

‘After telling us they would allow us to go to the States, we were sitting at Charlie’s bedside when we were served a court summons in a brown envelope. Anyone would be upset by that. It was so intimidating, standing up to such a big, powerful hospital. We now know hospitals retain lawyers in-house who are incredibly experienced in winning these sort of cases. They do it all the time.

‘The difference is usually it is behind closed doors, with life support literally being switched off the next day.

‘That said, our own legal team became emotionally involved. Often, we were all in tears at the cold way we were treated. They represented us for free because they strongly believed in our case.

‘We were incredibly fortunate. Had we had to fund all of this ourselves, it could have cost £1 million. What ordinary person has that sort of funds?’

Nor do they regret going to the media, which prompted the GoFundMe online campaign and raised £1.3 million to send Charlie to the United States. ‘We had already spent five months trying to mediate with GOSH. We only went public when we were served court papers. We were absolutely desperate, and the media was our only option.

‘We lost a lot of our privacy and have coped with the nastiest online abuse [the couple were accused of being attention-seekers and of prolonging the suffering of their son for glory] so that we could raise valuable issues — and not just for us.

‘Should we lose parental responsibility when we take our children into hospital? Should a hospital be allowed to prevent you seeking treatment or a second opinion elsewhere?

‘Surely these are issues which could affect any parent that we should be discussing. We, as parents, should not be criticised or ashamed for raising them.’

Charlie, who is only the 16th person in the world to have his rare form of the genetic condition mitochondrial depletion syndrome, spent most of his short life in hospital

A particular low point was when GOSH put out a statement saying doctors had received death threats over the case. It went out the day after Chris and Connie had made the heart-wrenching, but not yet public, decision to let Charlie go.

They say they have never spoken badly of GOSH themselves; that their plight was hijacked by some to push their own agenda.

Of Michio Hirano, the American doctor who gave them hope, and whose ethics were questioned in court by Katie Gollop QC, representing the hospital, they still will not hear a bad word.

Connie and Chris point out that Hirano denied claims by Gosh that he had financial interest in some of the medication offered, which has been used on 18 people with another form of mitochondrial depletion syndrome.

They remain convinced he had their best interests at heart.

‘He is one of the best doctors in the world,’ says Connie. ‘He had been trying to help us since December, and it is shocking how he was vilified by GOSH.

‘He was never invited to examine Charlie. Had he been, then he would have done — and we believe Charlie would now be in the U.S. having treatment. His views were backed by six other doctors who all specialise in mitochondrial depletion syndrome.’

The couple are already looking to the future. They are setting up The Charlie Gard Foundation, which aims to help any parents who find themselves in a position where they have to switch off their child’s life support.

The £1.3 million raised will go to the foundation, which is set to be registered as a charity. As to the future, the couple see it very much together. They haven’t ruled out having another baby.

Charlie Gard, who died on Friday after his parents’ heart-breaking battle to keep him alive, will be buried with his favourite cuddly toys

However, any child conceived naturally would have a one in four chance of suffering the same plight as Charlie.

‘We would need to have a type of IVF called pre-implantation genetic diagnosis, known as PGD, where embryos are screened for the condition,’ explains Connie.

‘Charlie brought such joy and love into our lives that we can’t possibly imagine not having a family in future. We both feel going through this together has made us closer.’

First, though, they admit they need to recover from what has been a deeply stressful time.

Chris is likely to return to work as a postman and Connie, a carer, plans to put her energies into The Charlie Gard Foundation.

Sadly, the ‘what ifs’ will haunt them for ever. ‘We can only hope hospitals learn from our case. We believe Charlie was sent to us for a reason. And we will ensure that his death wasn’t in vain.’