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

An open letter to anti-vaxxers

Dear anti-vaxxers,

I know you think you mean well. You probably even fancy yourselves as nice people. Indeed, if I came across you as I was going about my business, we would probably have a perfectly pleasant interaction as long as the exchange didn't involve a discussion on vaccination.

But your willful ignorance, your desperation for a conspiracy theory, your refusal to listen to a world of science from incredibly smart people who do not actually have vested big pharma interests, and your obscene, privileged posturing make you and your ilk terrible people. Sorry, but by refusing to understand and accept the importance of herd immunity in eliminating horrible diseases, you are being dreadful.

By promoting your selfish, anti-science agenda, you are putting vulnerable people at risk. Children with cancer. Anyone with a compromised immune system. The elderly. Newborn babies. People with allergies to vaccine ingredients. Children who are in between vaccinations, such as the series of injections for whooping cough. A story I wrote as a young reporter back in 1996 was about a child who contracted whooping cough in between shots in rural Australia. The sound of her little lungs struggling with a cough that sounded like someone choking a puppy is not something I ever want to hear again.

Do you feel good about yourself now?

You are pontificating from a place of modern privilege. You probably don't remember the awful era when entire families were wiped out by measles. Or when polio forced children into iron lungs. Or when the horrific menace of smallpox killed millions of people. Or when there were no rubella vaccinations to prevent children being born with life-altering conditions? In the last week, people in Britain have been moved to donate more than £300,000 to help a 67-year-old man who was mugged outside his house. His name is Alan Barnes and he suffers from serious sight, growth and bone problems because his mother contracted rubella when she was pregnant in 1947. But ensuring girls are vaccinated against rubella prevents these conditions being passed on during pregnancy.

It is because of vaccination that you probably don't know anyone who has suffered with polio or smallpox. It is because of vaccination that measles hasn't killed any children in your street. It is because of vaccination that child mortality is low in the developed world. Vaccination has made the world a better place.

But diseases such as measles and whooping cough are making a comeback that is about as welcome as a new Dennis Waterman album.

Spare me your lies about vaccination causing autism. It doesn't. And even if there was a connection, which there isn't, it is appalling that you'd rather have a dead child than an autistic child.

Spare me your citing of the Merck case as a reason to not vaccinate. I know that Merck overstated the efficacy of vaccines. But Merck is not the sole manufacturer of vaccines. And this case does not mean all vaccines should be banned. Your own exaggerations are like calling for all cars to be banned because one car manufacturer had a recall.

Spare me your whining about the evils of big pharma. I am not an idiot. I know drug companies make money from vaccines. But so many eminent scientists who are not on big pharma's payroll have conducted study after independent study on vaccine safety and risks (and yes, I acknowledge that, like any medicine, there are risks but the benefits far outweigh any risks). Immunologists and epidemiologists know what they are doing. They know that while you are freaking out about formaldehyde, they know exactly how much is required to make a safe vaccine and they know that not all vaccines contain formaldehyde and they know there is more formaldehyde in a goddamn pear.

Spare me your "I didn't vaccinate and my kids are perfectly healthy!" rhetoric. You fail to comprehend causation and correlation. And if your anti-vax dogma stays with them into adulthood, they may not be perfectly healthy if they travel to a country where travel jabs are highly recommended and they contract something delightful such as typhoid or cholera. Perhaps if your kids go to places where diseases that are largely unheard of in your backyard - and contract those diseases for themselves - they might learn the error of your ways. But, Christ, what a way to learn that lesson.

Spare me your "But if your kids are vaccinated, why are you worried about my unvaccinated kids?" crap. Please at least try and understand herd immunity instead of being content to wallow in the arrogance of ignorance.

Do I come across as a bit rude? Do you feel as if I am shaming you for not vaccinating? Good. I am not here to spare your precious snowflake feelings because you are ignoring people of science who are way smarter than you or I, and you are instead devoted to a movement popularised by bloody Jenny McCarthy, and fuelled by stupid websites such as Natural Health News, Health Impact News and Mercola.

If explaining the importance of vaccinations to you through the lessons of science and history is not going to work on you, then I have no qualms about making you feel ashamed. If parents of vaccinated kids don't want your kids around, perhaps you can take the time you would have spent ferrying them to playdates to think about what you are doing to your kids and to other people.

You should be seen as a pariah, as someone who is on the wrong side of science and history.

Yours sincerely,

Georgia Lewis, a successfully vaccinated member of society since 1976.

It's open season on parents

Judging parents, in particular mothers, has become a global sport. And the way we pour scorn on celebrity mothers is merely a pitiful reflection of the way we judge mothers we come across in our own lives.*

Lily Allen caused significant horror when she admitted that she got bored with staying home with her children and that's why she made another album. She didn't say she hates her kids, as far as we know she doesn't starve or beat her kids, and they seem to be perfectly healthy. But she was honest enough to admit that being a mother wasn't 100% fulfilling and, as such, she wanted to do other things with her life.

If a mother goes back to work after having a baby and she is looking forward to it, good for her. While economic necessity is a big reason for many women to return to work after having a baby, for many others, the reasons include spending time with grown-ups, taking on challenges that are not related to being a mother, relieving the cabin fever of staying at home with the kid, and simply reminding herself that she is not solely defined by her offspring. How any of this is anyone else's damn business is a mystery to me.

Meanwhile, the Duchess of Cambridge was criticised for the way she carried her baby off a plane and for taking a kid-free holiday with her husband when the baby was seven months old. It's not as if Prince George would have been left chained to a radiator for a week. Good Lord! Personally, I am no fan of any monarchy but equally I don't think the Duke and Duchess of Cambridge are terrible parents either.

Among the parents I know, there are massive variations in the age of their kids when they decided to take a holiday without them - or even leave them overnight with a babysitter. What works for one family might not work for another. Again, how any of this is anyone else's damn business is a mystery to me.

Then ex-Neighbours star Jane Hall felt the need to tell her listeners on Sydney radio that model Miranda Kerr "repulsed" her for having the temerity to talk about sex in an interview with GQ magazine. According to Hall, Kerr talking about sex was repulsive because she is "a young girl" (er, she's 30...) and "someone's mother" (which one can only assume happened because of sex). Clearly, Kerr never got the memo about how women must shut off their sexuality like a light switch the instant they give birth.

Given that I have friends with more than one child, I am pretty sure that despite the inevitable tiredness and time pressures of parenthood, it is not the death knell for sex either. And while I don't monitor my friends' bedroom activities, I can confirm that parents do still talk about sex, often in explicit detail.

Neither Allen, the Duchess or Kerr are bad parents. Obviously, having wealth and privilege helps make their lives easier, despite Gwyneth Paltrow's moronic comments about how simple life is for mothers who work in offices rather than on film sets. But I wouldn't even describe her as a bad mother, just a daft one with no idea what it's like outside her organic lentil bubble. And there is no law against daftness.

But the culture of judging parents has created a maelstrom of loud voices calling for such things as making drinking alcohol in pregnancy a criminal offence (absurd when there is no medical consensus on alcohol consumption in pregnancy), banning smoking in cars with children (which is surely commonsense - not even the most committed smoker I know would smoke in a car with kids and, as a bonus, it's hard to police) and now the Cinderella Law that will be mentioned in the Queen's speech at the next opening of Parliament.This would make emotional cruelty towards children a criminal offence.

We really need a lot more detail on definitions for the Cinderella Law before we can form a clear view. While there are certainly horrific cases of children being damaged by neglectful parents, the law's main cheerleader, Robert Buckland, a Conservative MP, made this sweeping statement about it on BBC Radio 5 Live: "You can look at a range of behaviours from ignoring a child's presence, failing to stimulate a child, right through to acts of in fact terrorising a child where the child is frightened to disclose what is happening to them."

It's not hard to see how such a law could be open to abuse and time-wasting false reports. Is the mother who needs to take a moment in the garden to compose herself because her kids are behaving horribly an emotional abuser? What about when a parent is tired and plonks a child in front of the TV for a couple of hours just to get some peace and quiet or the washing done? How about when a child is older and savvier - but still legally a child - and tries to criminalise his or her own parents in a fit of teenage vengeance? If you think an adolescent would never do that to a parent, you haven't met many adolescents. After all, we are living in an era where childhood is longer than ever.

Will there be some sort of state-sanctioned quota on hugs and kisses that will mean a child is being loved enough? What if there are too many hugs and kisses and the pendulum swings from neglect to sexual abuse?

As things currently stand, too many kids do slip through the net and end up abused and, equally, there are ridiculous cases of false accusations given a life of their own by over-zealous social workers. A commonsense-driven balance between parental responsibility and state intervention when required needs to be struck.

Whether more laws are required or just better application of existing laws, I am not sure. But I am sure we are living in an era of extreme judgement of parents. Eleanor Roosevelt nailed it when she said: "Great minds discuss ideas, average minds discuss events, small minds discuss people." Perhaps we could all benefit from less talk about the scandalous mother who got bored by her kids/took a holiday/talked about sex. We could do with more talk about how we can create a society where we deal effectively with genuine abusers while accepting that parenting is not a one-size-fits-all occupation where there is only one way to do it right.

* Disclaimer: It is perfectly acceptable to judge parents who don't vaccinate their kids. They do not understand science or herd immunity and their actions harm others.