No winners in the tragic case of Charlie Gard

It is impossible not to be moved by the plight of Chris Gard and Connie Yates, parents of Charlie Gard, the 10-month-old baby suffering from infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). It is a cruel condition which causes progressive muscle weakness and brain damage. We have no real way of knowing if Charlie can feel anything because he can't see, hear, move, make any noises, breathe without the help of a ventilator or receive food without a tube. He is epileptic and his heart, liver and kidneys are failing.

At present, there is no effective cure for MDDS. However, specialists in the USA offered Charlie's parents hope in the form of an experimental treatment called nucleoside bypass therapy. Chris and Connie launched a fundraising appeal with a target of £1.3 million to cover the costs of treatment, which it passed after 83,000 donations came in.

But British courts and now the European Court of Human Rights (ECHR) have ruled that it is not in Charlie's interests to travel to the US for this treatment. This means that palliative care, including removing life support systems, allowing Charlie to quietly slip away, is the next step.

All courts which have heard the case have examined extensive medical evidence and have all come to the conclusion that nucleoside bypass therapy would have no real prospect of extending or improving Charlie's life. Those who are using this case as a stick with which to beat the EU are being absurd - if the Conservatives make good on their pledge to withdraw from the ECHR as part of the Brexit process, this option is gone forever. Without this court as an option, it is highly likely that Charlie would have passed away already.  

Nucleoside bypass therapy has never been tried on anyone with Charlie's gene before. In theory, the treatment could repair Charlie's mtDNA and help it synthesise so he is given the compounds his body is not producing naturally. So far, it has only been used with very limited success on patients, such as Arturito Estopinan, whose condition is not as serious as Charlie's and whose affected gene is not the same as Charlie's. 

The treatment is an oral medication which would be taken over a six-month period. A large proportion of the £1.3 million cost would involve the risky and highly specialised procedure to transport a gravely ill baby who cannot breathe on his own from the UK to the US, along with whatever the hospital would charge, and the costs incurred for Chris and Connie to stay in the US for the duration of the treatment. Money is also required to pay fees to the GoFundMe website, which has hosted the appeal - something for anyone considering an online fundraising campaign to take into account.

However, the neurologist who would be overseeing the treatment told the Family Division of the High Court that Charlie is in the "terminal stage" of his illness. He also said that the treatment will not reverse the brain damaged which Charlie has already suffered, and that he had not at first realised the full extent of Charlie's condition. The sad reality is that even if Charlie survived the trans-Atlantic journey, by the doctor's own admission, his life expectancy is heartbreakingly short and the treatment does not represent a cure.

Pope Francis issued a statement from the Vatican's Academy for Life in relation to Charlie's case which outraged many Roman Catholics, although I think he showed a combination of compassion, humanity and realism. The statement acknowledges that there are still limits to modern medicine saying that we do "have to recognise the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs". The statement goes on to refer to Encyclical Evangelium Vitae in regard to "avoid[ing] aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or family".

I do not for a moment think the British or European justice systems are in the business of wanting to exterminate babies. And neither is Great Ormond Street Hospital, the excellent children's hospital which has been treating Charlie. It is one of the world's best paediatric hospitals and every day, it does wonderful work, saving the lives of children, and offering the very best palliative care for those who sadly will not make it to adulthood. Depressingly, people have publicly stated they will no longer make donations to the hospital because of the Charlie Gard case.

The Ashya King case has been cited as an example to follow in the case of Charlie Gard - that was the 2014 case of the parents of Ashya King removing him from a British hospital and taking him to the Czech Republic for proton beam therapy for a brain tumour. But in that case, Ashya, then aged five, was able to travel to Prague without medical assistance and the treatment was effective. The farce of an international manhunt for Ashya's parents was not a high point in crime fighting but as a result of the successful treatment Ashya received, the UK is to get its first proton beam therapy machine at a cost of £17 million. It will be installed at the Rutherford Cancer Centre and is expected to treat 500 people each year.

That is a wonderful legacy and the best possible outcome of the Ashya King case. The legacy of Charlie Gard will most likely be his parents starting a charitable foundation with the £1.3 million in donations - if this means further research for mitochondrial conditions can take place in the UK, who knows what amazing scientific advances might be achieved on British shores? 

For now, Charlie's case represents an awful intersection between the right of parents to seek medical treatment for their children and the often devastating realities of what is medically possible. Pope Francis again said it well in his statement when he said that "the wishes of the parents must be heard and respected, but they too must be helped to understand the unique difficulty of their situation and not to be left to face their painful decisions alone."

The case also exposes the astronomical costs of American healthcare for the uninsured, along with the decisions which balance finance with medicine faced on a daily basis by NHS trusts across the UK. Neither health system is perfect and, based on medical evidence, neither system is currently in a position to help Charlie beyond making his last days comfortable, peaceful and dignified.

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Here is the link to the Supreme Curt judgement

Here is the link to the Court of Appeal judgement

Here is the link to the High Court judgement

Photography by Lindsey Turner/Flickr

In defence of John Bercow

Poor Donald Trump. When he visits Britain, he is going to be no-platformed everywhere he goes, the media will completely ignore him, nothing he says will ever get reported, and the people of this country will have absolutely no idea he is even here. Poor little Donny won't have any freedom of speech.

Except that will not be how it pans out when he takes up Theresa May's embarrassingly fast invitation to pop across the pond and say hello. His visit will dominate the news cycle for days. His views will be heard by millions. This is a man who makes global headlines every time he tweets. He has more platforms than an Olympic diving team.

But none of this has stopped Trump's British apologists from demanding John Bercow resign. This is all because Bercow plans to use the power he has as speaker of the house to not invite Trump to address MPs in Westminster Hall. Please note that Bercow has not called for Trump to be refused entry to the UK or to never speak to anyone or for press conferences to be called off.

All he has done is refuse Trump an invitation to speak at Westminster Hall as a statement against Trump's racism and sexism, and to send a message of British support for equality before the law and an independent judiciary, both concepts that seem to elude the wit of Trump. Bercow had the opportunity to take a stand, to speak out on behalf of British values and he took it. He can look back on this in years to come and be very proud. Good on him.

Bercow's upholding of support for an independent judiciary is particularly important. This week, a 44-year-old man from Hertfordshire was arrested at Gatwick Airport on suspicion of planning a terrorist attack when he disembarked from a flight from Iraq. British idiots, who are apparently experts in US constitutional law, started saying that this was proof that Britain should copy Trump with travel restrictions for people with passports from Iraq - except that at this stage we don't know if the arrested man had an Iraqi passport.

It is entirely possible that the arrested man only has a British passport, in which case a travel restriction would not work. And even if he does have an Iraqi passport, he has been arrested before committing a terror attack on British soil. This would indicate that we don't need to copy Trump because our intelligence services and police are already being effective.

The same idiots who called British judges "enemies of the people" for ruling that our democratically elected MPs should have a vote on triggering Article 50 for leaving the EU are siding with Trump instead of the independent judiciary on the issue of the travel restrictions yet, curiously, they also have a lack of respect for our counter-terrorist forces, even when they do their job properly.

Trump's apologists have also pointed out this week that Bercow has shaken hands with leaders of such undemocratic regimes as China and Saudi Arabia. This is true but these leaders were not invited to speak at Westminster Hall. In any case, plenty of people who are supporting Bercow have also publicly objected to the human rights abuses of both countries and plenty of others with whom Britain breaks bread.

Barack Obama only got the opportunity to address Westminster Hall in 2012, after he had already served an entire term as president. Aung San Suu Kyi has addressed Westminster Hall, which made a powerful statement against the despotic forces in Burma that have imprisoned her and attempted to silence her over the decades. Nelson Mandela has also had this honour. While there are debates as to whether he was a freedom fighter or a leader of thugs, it is hard to argue that he was not a towering figure in ending the official policy of apartheid in South Africa.

In this historic context, for Theresa May to offer Trump a state visit within moments of his election is desperate, premature and completely embarrassing. In the wake of public pressure as well as an outcry that has transcended party politics, it looks like Trump will still be coming over here but his visit will be scaled back.

The latest news is that instead of London, the visit will move to Brexit heartland of the Midlands and Trump will use the opportunity to raise funds for British veterans. Oh good. So basically Trump is employing the same tactics of far right hate group, Britain First. They gained a lot of social media traction by posting things many people who are by no means extremist will agree on, such as support for our troops when they return from war zones and memes about not being cruel to dogs. But Britain First, like Trump, also holds plenty of despicable views. It would appear they are both playing the "But I support the troops!" card as a distraction and in an attempt to mislead people.

In any case, charities such as Help For Heroes should not have to exist in the first place.

If a government sends men and women to war, to risk death and life-changing injury, the least they can do is ensure that injured veterans are housed and do not slip into abject poverty. If Trump was going to schedule a meeting with the defence secretary on how the US and British governments can better help injured veterans when they return home, that would at least deserve some respect. The latest reports indicate Trump wants to host a mass rally with tickets at £10 a head.

Trump can expect protests wherever he goes. Moving the visit away from London won't stop that. People will travel to make themselves heard and it is simply wrong to assume that everyone in the Midlands will be delighted about Trump turning up in their neighbourhood. If anyone wishes to exercise their right to protest when Trump arrives, that should be respected. This will not impede Trump's right to freedom of speech.

Peaceful protest has long been a hallmark of British democracy. With the latest anti-Trump protests, there have certainly been some potty-mouthed banners, especially in Scotland, but peaceful does not mean colourful language is verboten.

In any case, Britain has outdone itself in the last few weeks with the most polite online petition ever.

At the time of writing, 1,853,814 people signed up to the following: "Donald Trump should be allowed to enter the UK in his capacity as head of the US Government, but he should not be invited to make an official State Visit because it would cause embarrassment to Her Majesty the Queen."

To say that Donald Trump is free to visit this green and pleasant land but that it should not cause embarrassment to an elderly woman is adorable. And, if Trump doesn't get to meet the Queen, that will really grind his gears. But it does not mean for a second that his freedom of speech is being denied. Seriously, Trump apologists of Britain and the world, get a grip.








Photography by Matt A.J/Flickr