Charlie Gard – a family’s real life story in the spotlight … 

“You have been absolutely amazing Alison” – Connie Yates

Featureworld is delighted to win the NAPA prize for Feature of the Year 2018 for the work done on this story

 

Charlie Gard’s parents came to Featureworld to get their story out to the world’s press… 

Who was Charlie Gard?

Charlie Gard was a baby who suffered from a rare mitochondrial condition which affected his muscles.

Why did the parents of Charlie Gard decide to go public with their story?

Doctors at Great Ormond St Hospital felt there was no hope and Charlie Gard, who was kept alive on a ventilator, should be allowed to ‘die with dignity’.

His parents Connie Yates and Chris Gard disagreed. They found a reputable and well respected doctor in the US who was willing to try experimental therapy that he believed could save Charlie’s life.

They decided to come to Featureworld as a last resort as they felt exposing their story publicly was the only way they could raise the £1.3million funds needed to send Charlie privately to the US. They also wanted their story to be out in the open as they believed it raised many ethical issues about parental rights and the rights of doctors – and these issues should be debated openly as they affect all of us.

Why did Charlie Gard’s parents go to court?

Great Ormond St Hospital doctors took the parents to court as they refused to allow them to switch off Charlie’s life support. The doctors needed a court order to switch the life support off.

What happened to Charlie in the end?

Doctors claimed the US treatment, which was experimental, could cause Charlie harm and that as their tests showed he was brain damaged, it would be futile to try it.  His parents and legal team disagreed and a battle ensued through the UK courts. At the heart of the issue was that while the parents accepted Great Ormond St did not want to treat Charlie, they believed they as parents should be able to take him for treatment to an alternative doctor and there was no evidence that the treatment would cause any harm.

However, the parents lost their battle in the UK courts. The European Court of Human Rights decreed the case had been properly dealt with in the UK courts and refused to intervene, leaving the way for Charlie’s life support to be removed.

His parents continued to battle for their son. Their story touched the world with the Pope, US President Trump and the UK government all becoming involved.

At a final hearing at the High Court  – after seven experts signed a letter saying new evidence showed Charlie could be helped by nucleoside therapy – it was discovered tragically Charlie had been left so long without treatment that he could no longer be helped.

His brave parents made the decision to turn his life support off and on 28th July 2017 he died.

 

Read how the Charlie Gard story unfolded …

By Alison Smith-Squire

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 –  immediately making two front page stories for the Daily Mail and in newspapers and television programmes throughout the world.

As a writer I have been able to represent Charlie Gard’s family for free. I am paid for writing their stories which means they have never paid me a penny and have been able to keep all money fundraised for him.

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 did 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 felt their parental rights were stripped away with even their son Charlie being represented by a Guardian whose opinion they did not agree with. 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 go 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

Gofundme page.

For example doctors  lifted a partial do not resuscitate order on Charlie, who despite being in intensive care, continued to thrive putting on weight normally 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.

A few days later Connie gave me a moving and incredible interview which appeared over two pages of the Daily Mail. 

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 understood all the medical issues around this case and 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 have helped Charlie regain movements they could not repair a structurally damaged brain. Such a therapy could in fact cause more pain (and there were concerns he was in pain in intensive care.) Treatment would therefore be ‘futile’.

Doctors were concerned that treatment could partially work and leave Charlie in a state where he had an extremely low quality of life. They were also concerned about ‘experimental’ therapy being tried out on a baby. Even if the findings did help doctors understand the condition more, they felt it was unethical to trial it on Charlie.

However, there were issues that deeply concerned me. Firstly because of Charlie’s mitochondrial condition, which meant his paralysed muscles could not react as a normal person would do to pain or stimuli, no one could be completely 100 per cent sure the brain damage was as bad as doctors believed. We also heard in court that some brain function tests were carried out when Charlie was sedated. And his parents, who were with him all the time, felt their son knew them and I believe that. Although doctors said Charlie could not open his eyes, they produced photos and video footage which showed he did. This, the family felt, showed he did have a sleep/wake cycle and was not brain damaged.

Yes the treatment, given as a powder in food or milk, had not been used on any animal or human with Charlie’s mutation. But it had been used with success on children with similar mitochondrial conditions. And certainly I heard nothing that told me it was 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 mentioned with nucleoside therapy is the runs which soon settles.)

The parents also said many times if they felt the treatment in the US was not working or causing him distress, they would let him die content in the knowledge everything possible had been tried. The issue for Connie and Chris was that they were listening to doctors – they had a world renowned doctor in the US who was happy to treat him.

Nevertheless doctors in the UK said the fact the US doctor would treat Charlie did not indicate such treatment should go ahead as in the US if parents want treatment and can pay for it, then it goes ahead. In the UK treatment only goes ahead if it is believed by doctors to be in the best interests of the child. GOSH doctors always claimed it was not about money and if they had felt it was in Charlie’s best interests to have nucleoside therapy, then they would have offered it for free.

This is my opinion: It was admitted in court by many, including the UK doctors, that there was a ‘theoretical chance’ the therapy could work so there was a chance. Tragically we were later to discover other experts believed Charlie had more than a ‘chance’ and in January far from showing catastrophic structural brain damage, he had the scans of a relatively normal boy.

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 was shocked at how loving and intelligent parents can have so little say in the UK about their child’s welfare. Most concerning is that while Great Ormond St said it could not treat Charlie, it was able to legally prevent the family from seeking alternative treatment at a reputable hospital.

Another concern is how Great Ormond St doctors dealt with the family. It was stated in court that doctors did at the beginning consider giving Charlie nucleoside therapy but then decided not to when Charlie’s condition deteriorated. However, it appeared no one sat down with the parents and explained this. There was no letter sent to them outlining options considered and why doctors came to the decisions they did. Indeed it came out in court that one doctor cruelly referred to Chris and Connie as a ‘spanner in the works’.  If as doctors at GOSH stated – there was no chance of this therapy working – then certainly Charlie would have died within a short time of arriving in the US. The fact GOSH took the family to court could have actually prolonged his suffering as he was kept alive while legal proceedings took place.

It is a pity that no judge highlighted any of these shortcomings about the care of the family by GOSH especially the communication aspect as it did appear to me that doctors decided on Charlie’s care without properly explaining their reasoning with the family – as shown by a total lack of any emails, letters or records of any meetings with them. While doctors are very busy – this was how the lack of communication was explained away – they must make sure that loved ones are kept properly informed of decisions.

After losing the High Court battle,  the family  brought in a new legal team headed up by QC Richard Gordon and solicitor Charles Da Silva who made an application to appeal the High Court decision.  

Sadly Connie and Chris lost the appeal. They and their lawyers then went to the  UK’s Supreme Court to see if they could gain permission for a hearing to discuss the legal issues on Human Rights Grounds. However, this was also refused.

After taking their case to the European Court of Human Rights in Strasbourg, France, they also refused to consider it stating that it had been dealt with properly in the UK courts. You can read the assessment of the case by the European Court of Human Rights in their press release here.

However the parent did not give up with the Pope and US President Trump all offering help with their story making headlines around the world and Connie going on Good Morning Britain to say why she knew the decision by the courts was wrong.

Five doctors from around the world came forward to say they felt Charlie should have the treatment as there was new evidence that it could be successful.

Great Ormond St Hospital referred the case back to the High Court to examine the new evidence. Before the case began I wrote an article with Connie for the Daily Mail about how she didn’t know how she would cope if it were ruled again Charlie should have his life support removed.

Shortly after the case began Great Ormond St Hospital put out a press release stating that due to the case their doctors had received death threats. The family were extremely upset about this and spoke out about how they condemned such abuse and also revealed they too had suffered enormous abuse from people who did not agree with them.

Sadly a few days later it emerged Charlie had been left so long that his muscles had atrophied. Experts reassessed the scans from January and decided far from having brain damage, they showed a relatively normal boy. However, because of the deterioration in his muscles, the nucleoside treatment would no longer work.

Charlie’s devastated parents decided as nothing could now be done to help Charlie, they would let him go. During an emotional High Court hearing Connie read a statement out in court while Chris read a further one out to the media. We were all devastated and Connie and I broke down in one another’s arms more than once.

But the court hearings were not over. Like any parents, Chris and Connie wanted their son to die at home. However, the hospital said it was not possible claiming for example the equipment Charlie needed would not fit through the front door of their house. Chris and Connie launched a desperate global search to find the doctors the hospital claimed their son would need to supervise his death at home or in a hospice (where they hoped they would have a few days with Charlie) but it was not to be, Tragically, within 48 hours of the hearing ending the hospital decreed Charlie should be taken to a hospice and within hours of arriving there, he had died.

His death made front pages all over the world. The boy who had touched the world had finally died.  Connie said: “Our beautiful little boy has gone, we’re so proud of him”

A week later Connie and Chris did an emotional interview with me about how they had bought their son home, but he was no longer alive. You can read Charlie Gard Comes Home here.

While I will always feel I did my job getting Charlie Gard’s story out there, I will always be devastated it did not save his life.

LATEST:  Connie and Chris have recently got engaged and celebrated the birth of a healthy baby son, Oliver. They put funds raised during their fight towards the charity, The Charlie Gard Foundation, and are fighting for a change in the law. 

Featureworld wishes them all the very best!

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