Charlie Gard – a family’s real life story in the spotlight …
Charlie Gard’s parents came to Featureworld to get their story out to the world’s press…
At the beginning of December 2016 I got a text from a distraught mother called Connie Yates. It said: “Our son is currently on intensive care & the hospital want to end care…”
It was a Saturday afternoon and I was making soup but the message was so disturbing that I promptly switched off lunch and rang Connie.
That text was to be the beginning of one of the most heart-wrenching stories I have ever dealt with – so far it has appeared on two pages of the Daily Mail and in newspapers and television programmes throughout the world.
Connie Yates, a carer and partner Chris Gard, a postman, had found themselves in the middle of a nightmare, their usual every-day lives turned upside down. Their own descriptions of themselves are that they are just like any normal, ordinary couple – and indeed one of the reasons this story is so compelling is that frankly this could happen to any one of us. They had no idea until they had Charlie that they were each a carrier of a rogue gene – it is probably millions to one for two people carrying it to even get together (and even then such a condition is unlikely
to affect every child such a couple will have.)
Even more upsetting, son Charlie – their first baby – was born completely healthy. They were thrilled and adored being new parents but at eight weeks he became unwell and was rushed to hospital where he ended up needing a ventilator to breathe. Tests discovered he was the 16th person in the world to be diagnosed with a rare type of mitochondrial syndrome which causes progressive muscle and organ weakness.
By the time Connie texted me, doctors at Great Ormond St Hospital felt there was nothing they could do and it would be kinder to let Charlie die. But his utterly devoted parents disagreed and searched the internet. They came up with a treatment which had helped other children with a similar condition in the US – and the doctor was willing to try the therapy on Charlie.
The problem was the treatment alone (which does not include the cost of
transporting such a sick child on a private jet) would cost £1.2million – and although UK doctors initially appeared keen to support them, they still said it would be in Charlie’s best interests to remove his ventilator and let him die with ‘dignity.’
Connie and Chris could not consider doing such a thing – not when a treatment that could save their son’s life was available. So they refused to give doctors consent and the hospital launched High Court action to ask a judge to consent instead.
I found it shocking that doctors can decide the fate of our own children. And one of the worst aspects of this case has been that Connie and Chris have felt their parental rights have been stripped away. But in fact as explained here, in the event of a disagreement between parents and doctors treating their child, either side can invoke the ‘inherent jurisdiction’ of the Family Division of the High Court to decide what course of treatment is in the best interests of the child.
During the period from early December when the family first came to me for help with their story and the end of February 2017 when the hospital launched the High Court action, my advice was that the family should not to public. And they agreed.
That might seem a strange piece of advice from a publicist. But I work in the best interests of the interviewees and in this case felt publicity should be the last resort. We all hoped that Great Ormond St Hospital would not take such a step as taking the couple to court. Meanwhile, I stayed in contact with the family while they launched a Gofundme page to start raising the necessary funds for treatment in the US.
However, in late February court papers were served. I was shocked. Connie and Chris were naturally devastated.
We had 48 hours before the first preliminary hearing at London’s High Court was due to go ahead. I began quietly putting feelers out to national newspapers to gauge interest.
Even then before making the final decision to go public, we waited until the family had held an urgent meeting with Great Ormond St to see if court action could be averted.
But when at this last ditch meeting it became clear doctors were determined to see it through and they also did not agree with Charlie going to the US to try the new treatment, we all felt there was no other option but to go ahead with media.
With media coverage it would mean the story and ethics around it – surely in the public interest – would be in the public domain and not going ahead secretly behind closed doors. In addition if the family were to raise the money needed to take Charlie to the States for treatment it would need a massive input of generosity from the public to make it happen.
By then, and in consultation with the family, we had chosen the Daily Mail to run the story. It was decided the piece would run the next day – the day of the first hearing.
This meant copy being turned around within hours – luckily I am a fast writer but even so producing an additional 1000 words within an hour for Friday’s paper was a challenge. Meanwhile the couple – who in their own words are ‘the last people to seek publicity’ – were photographed and provided precious pictures of Charlie before he fell ill and in the hospital.
The hospital were approached for a comment. They said: ‘Charlie has a very rare and complex disease, for which there is no accepted cure. We have tried to give him the best possible chance of survival. But his condition has continued to deteriorate and we feel we have exhausted all available proven treatment options. We appreciate how hugely distressing this is for his family.’
This first piece appeared on the front page of the Daily Mail and the subsequent High Court case where a judge gave the family a month to prove Charlie should be allowed to live, also made the front page the next day.
The story also appeared in every national newspaper including The Times, Telegraph, Guardian, Daily Express, The Sun, Mirror, Metro and Daily Star as well as being reported by every news channel including the BBC, ITV, Channel 4 and Sky News. It was reported on news websites all round the world.
I have since written a series of articles for the Daily Mail, which is closely following the story, and has been hugely instrumental in promoting the family’s
For example doctors recently lifted a partial do not resuscitate order on Charlie, who despite being in intensive care, continues to thrive.
The couple have also given interviews on ITV This Morning, BBC’s Victoria Derbyshire, ITV News, BBC 5 Live, BBC World. And updates have also appeared in numerous local papers.
Of course the Charlie’s story continues to run. A court hearing on April 3 will decide if he should be given the chance for treatment abroad or if a judge believes doctors are right and Charlie would be better off dead.
Connie and Chris are extremely realistic. They know that even if Charlie gets the go-ahead by the High Court to try the treatment, it might not work. In this case they would still not regret anything because at least they will have done their very best for their son. They believe life is precious and I don’t think any parent could honestly say if they found themselves in this position, they would not do exactly the same. After all, if there was a treatment that could help your dying child would you rather let him die anyway – or would you want to explore that hope?
I know as a parent which option I would choose.
If Charlie is given the chance of life – which personally I believe should be offered to him if only because even unsuccessful medical trials help doctors develop new drugs – then the next chapter in this story will begin as he hopefully gets the treatment which we all hope could help.
Whatever happens Featureworld will be there supporting the family.
Click back to this page for updates.
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