Charlie Gard’s parents reveal how they finally brought him home… story in the DAILY MAIL
Connie Yates and Chris Gard bravely speak out after Charlie, their little warrior, recently died.
In an emotional exclusive interview given to me especially for the Daily Mail – the paper which broke their first story – Connie and Chris opened their hearts to reveal how they kissed and cuddled him as he died at a hospice.
They told how five hours earlier they left Great Ormond St Hospital for the final time flanked by security guards as they followed in a car behind Charlie’s ambulance.
Once at the hospice, they took him for a walk in the hospice grounds in a pushchair and made Plaster of Paris moulds of his feet and hands.
After he passed away, with his parents at his side, the couple then brought him home in a specially chilled cuddle cot which allowed them to spend some precious days at home with him.
Tragically they had fought to bring Charlie home – and it was very poignant that they were fulfilling this last wish – but Charlie was no longer alive.
The couple also reveal how difficult their ‘David and Goliath’ battle was against such Great Ormond St hospital, which in many people’s eyes can do no wrong.
And also how in the early hours of the morning of the day Charlie was due to die, Connie emailed the judge and begged for more time.
Their extraordinary story has raised so many issues which affect everyone of us. Should parents have more rights? Is it right that doctors have so much power that they can prevent someone from seeking an opinion or treatment at an alternative hospital?
We should all be grateful to Connie and Chris for raising these issues so bravely.
They are already looking to the future. Money raised to take Charlie to the US will now go towards a foundation to help other parents who face switching off their child’s life support.
As a couple they have stuck together and gone through an extraordinary journey which they believe has made them closer.
Chris and Connie don’t rule out having another baby in future, although they will need a special type of IVF to ensure any siblings are not affected.
However, Charlie brought them so much joy that they cannot imagine not having another baby.
See exclusive photos in the Daily Mail … and read below:
How we finally brought Charlie home…
By Alison Smith-Squire
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 below. Now and then, a smattering of squally August 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 was combed and his chubby face bath-time fresh. .
This was Charlie Gard, finally at home, where his parents, Connie and Chris, fought so bitterly 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.
The little boy actually took his last breath at 3.12pm 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. Not surrounded by equipment and machinery, without anything obscuring his lovely face,’ says Connie today. ‘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 hard for him. Had he lived, Charlie would have turned one yesterday(FRI).
His life – and his illness – drew us all in, from the Pope, to the President of the US, to the man and woman in the street. Why? Because the dilemmas surrounding his life – and ultimate death – encapsulated a question we all find almost impossible to face: who should choose when to start a life, and when to end it?
His plight caused serious questions to be raised about the highest laws in Europe, the rights of parents, the right to life, and the greatest question of all: should the opinion of doctors always over-ride 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 outrage and accusations of exploitation. There have been vicious hate campaigns waged against hospital staff and lawyers – and even the Gards themselves. There were interventions from American pro-life evangalists. 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 only wanted for their son to grow up like any other child. To learn to ride a bike, to read and write, go to school, make friends – 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, Charlie was found to have an incredibly rare genetic condition called mitochondrial depletion syndrome, which gradually starved his vital organs and muscles of energy. His strain of the disease is so rare, he is believed to have been only the 16th sufferer in the world.
Rarer still were the chances of his parents being carriers of the gene, and actually meeting, falling in love, and choosing to have a baby together in the first place. Had they met anyone else, they still probably wouldn’t know of the terrible assassin hiding in their DNA.
Charlie had been hospitalised at Great Ormond Street since last October, when he first fell terribly ill. His plight only came to public attention in March, when the couple challenged Great Ormond Street’s wishes to withdraw his life support and allow him to ‘die with dignity’.
Connie and Chris 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 for the first time how labyrinthine, 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 moment as ‘truly terrifying’.
‘I visualised Great Ormond Street as a big fish and Charlie, myself and Chris as tiny little fishes. It was terribly intimidating and stressful to find ourselves up against such a powerful hospital and one which in many peoples’ eyes can do no wrong. It’s equally terrifying to realise just how easily the rights of parents can be literally snatched away.’
What ensued was a bitter, months-long legal campaign: two High Court hearings, one Appeal Court hearing, another at the Supreme Court and yet another to 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. Connie, 31, and Chris, 33, finally gave up the fight.
It was a defining moment. The moment all hope – which had carried the parents through – was lost. ‘It was truly terrible. Chris and I were crying, our legal team were crying because we knew this was the end,’ says Connie. ‘We’d always decided if there was truly nothing that could help Charlie we would let him die with dignity.’
‘We rushed back to the hospital and when we saw Charlie in his bed, his little toy monkeys in his hands, our hearts broke,’ remembers Chris. ‘We sobbed at the hopelessness of it all.’
But the fight wasn’t over yet. 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 claiming intensive care equipment wouldn’t fit through the front 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 morning, Connie and Chris were left with less than 24 hours to say goodbye to Charlie.
It left barely any time for friends and family to visit for the final time.
‘We pushed another bed against his bed and Chris and I lay either side of him,’ recalls 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 cannot begin to describe the feelings you have as a mother knowing your child is about to die. I begged for more time – even a little. 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 the previous nine-and-a-half months felt surreal. The little 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 massive 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 behind 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, at around 8.30am, Charlie was transferred to a room at the hospice. The couple had five hours before Charlie 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.’
She recalls: ‘We dressed him in a white Babygro with angels 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 to actually 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.’
A nurse removed the tube and the sticky tapes that had kept it fastened 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 ‘cuddlecot’, 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 panic-stricken Connie had rushed him to hospital when he became unwell,
Once their son was transferred to GOSH, they never went home. Relatives picked up clothes and the parents stayed in accommodation for family of sick children 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 done since last October.
Chris says: ‘Congratulations on your baby boy cards lining the front room made us weep. Everywhere we looked there were remnants of those happy times with a newborn Charlie. His clothes, unused nappies, toys, bottles …
‘Although it was so upsetting, at least he was home, finally back where he belonged. I t 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, who says she and Chris are still finalising funeral arrangements for his burial.
‘During those precious days he looked even more beautiful without the tapes on his face. He just looked like a perfect sleeping baby.
While the guns in this epic of battles had 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 in flimsy their rights as parents are. To realise they are going to have to fight, tooth and nail, for what most of us take for granted.
Few can’t have wondered, witnessing this David and Goliath battle – the wan, fragile, tear-stained parents, climbing the steps to the austere 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 terrible volley of words and paperwork, both Connie and Chris say they says they are incredibly grateful to all the staff there for keeping their son alive and giving him such excellent intensive care.
She is adamant that on a daily basis there were no issues between them and staff, despite the ongoing court cases.
‘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(itals) 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.
‘Many decisions with hospital chiefs simply went ahead without us being there.’
She points out it was GOSH who took them(itals)to court, when they refused to withdraw Charlie’s life support. ‘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 those 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 US .
‘We had already spent five(itals) 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 (they were accused of being attention seekers and of prolonging the suffering of their son for glory) so we could bravely 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, we should be discussing – we as parents should not be criticised or ashamed for raising them.’
A particular low point was when GOSH put out a statement saying doctors had received death threats over the case – put 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 saying 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 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 US having treatment. Also his views were backed six other doctors who all specialise in mitochondrial depletion syndrome.’
The couple are already looking to the future. They are currently busy setting up The Charlie Gard Foundation, which aims to help any parents who find themselves in a position where they have to switch their child’s life support off.
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.
Any child conceived naturally, however, would have a one in four chance of suffering the same plight as Charlie – a risk they cannot take.
‘We would need have a type of IVF called pre-implantation genetic diagnosis, known as PGD where embryos are screened for the condition.
‘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.’
As well as finalising funeral arrangements – a date and a time has yet to be decided – they admit they physically 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.
The ‘what ifs’, however, will haunt them forever.
‘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.’
©Alison Smith-Squire, Featureworld