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 wrote a series of articles for the Daily Mail, which closely followed the story, was hugely instrumental in promoting the family’s
For example doctors lifted a partial do not resuscitate order on Charlie, who despite being in intensive care, continues to thrive and Connie spoke on Mother’s Day of her fears that it would be her first and last Mother’s day with her son.
The couple gave interviews on ITV This Morning, BBC’s Victoria Derbyshire, ITV News, BBC 5 Live, BBC World.
Over the following weeks I ensured updates continually appeared. The family ran an extraordinary social media campaign eventually raising £1.2million for treatment, with one mum of two, Helen Barnes giving £40,000 savings towards it.
However, at London’s High Court on 11th April 2017 the family’s hopes were crushed when Mr Justice Francis ruled Charlie should be allowed to die. It was a shocking moment and one I will never forget.
The story appeared yet again on the front page of the Daily Mail and many other papers. It was reported all over the world.
I spoke the parent of a child in the US who, his parents said, was alive due to nucleoside
therapy. People were divided – some felt it was the right decision while others felt Charlie was being denied a chance.
And I arranged for Connie and Chris to speak themselves about their fight on television – with them appearing for a second time on ITV This Morning.
For the record, I totally understand all the medical issues around this case and understand why doctors feel it is time to let Charlie go.
The treatment has not been used on any person or animal with his condition and therefore its side effects are completely unknown. In addition while the experimental therapies
might help him regain movements they cannot repair a structurally damaged brain. Such a therapy could in fact cause more pain (and he could be in pain now.) Treatment would therefore be ‘futile’.
However, there are issues that deeply concern me. Firstly because of his condition, which means his paralysed muscles cannot react as a normal person would do to pain or stimuli, we cannot be completely 100 per cent sure the brain damage is as bad as doctors say. For example his parents feel he knows them and I believe that.
Yes it has not been used on any animal or human with Charlie’s mutation. But it has been used with success on children with similar mitochondrial conditions. And certainly I heard nothing that told me it is potentially less safe than chemotherapy we routinely give babies which can cause devastating side effects and often does not work (indeed the only side effect is the runs which soon settles.)
This is my opinion: It was admitted in court by many, including the UK doctors, that there is a ‘theoretical chance’ the therapy could work. So I don’t understand how it can be ‘futile.’ Futile implies there is zero chance – which is not correct.
It is easy when it is not your child to think maybe it would be in the best interests to let Charlie die. But the reality is I don’t believe many parents would say that if they believed there was a glimmer of hope their child could have a treatment that might work.
Furthermore I am disgusted and shocked at how loving and intelligent parents can have no say in the UK about their child’s welfare. It has been a privilege to represent Connie and Chris and I am only sad that while I did my job getting their story out there, helping them to raise an astonishing amount of money, I could not influence the court’s decision.
Latest: The family have brought in a new legal team who have made an application to appeal the High Court decision.
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