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Jul 11

Charlie Gard: Why can’t his parents decide?

Charlie Gard in Great Ormond Street Hospital

Charlie Gard in Great Ormond Street Hospital

Stop Press (24/07/2017)

Charlie’s parents have ended their fight after a US doctor said it was now too late to treat their baby.  What would have happened had Great Ormond Street Hospital simply allowed them to take him to the US in March, we shall never know.

(And do read Canon Giles Fraser on this matter in the Guardian.)

Original article:

Many of us are now asking one question above all in the case of Charlie Gard.  Why does the judge not simply allow his parents to do what they think is best for their baby?

What is wrong with Charlie Gard?

Charlie Gard has a very rare mitochondrial disease, says an explanation in the Guardian.  His mitochondria are failing to supply energy to the cells in his body. This mitochondrial failure is leading to damage to his body’s organs.

Charlie is in intensive care at Great Ormond Street hospital in London.  Life support machines are keeping him alive because he cannot breathe by himself. The doctors say he has severe brain damage, and his heart, liver and kidneys are also affected.

However, Charlie’s mother, Connie Yates, told BBC Radio 4’s Today programme on Monday that her son is responsive, enjoying tickles and watching videos with his parents. She also said that she had yet to see proof that her son had irreversible brain damage.

But the doctors say Charlie Gard ‘should be allowed to die with dignity’.  That just means die, in plain language.  Mr Justice Francis, sitting in the High Court, agreed death would be in Charlie’s ‘best interests’.  How is that?

American hospital would treat Charlie

Charlie Gard with his parents, Connie Yates and Chris Gard

Charlie Gard with his parents, Connie Yates and Chris Gard

Moreover, Charlie Gard’s parents, Chris Gard and Miss Yates, have raised over a million pounds to take Charlie to a hospital in the United States.  Doctors there are offering nucleoside therapy, an experimental drug treatment.  It might not even work.  It probably could not reverse what has already been damaged.

Nevertheless, according to the BBC, the family’s lawyers say ‘cutting edge genetic science’ gives a ‘small chance’ of brain recovery.  It is a chance ‘worth taking’. The Bible agrees with that positive view:

Ecclesiastes 9:4 For to him that is joined to all the living there is hope: for a living dog is better than a dead lion.

The parents have taken the case to the Court of Appeal.  They even went to the European Court of Human Rights in Strasbourg.  But all agreed that to prolong Charlie’s life would risk causing him further suffering.  The European Court gave permission for the hospital to switch off Charlie Gard’s life support systems. They said further treatment would not help him.

Pope and President Trump intervene

But then Pope Francis offered the services of the Bambino Gesù paediatric hospital’s neurosciences department in the Vatican.  President Trump also expressed his support for the parents.

In addition, commentators in the United States are amazed at our legal process and decisions.  News Channel 3 reports a CNN wire on the story with astonishment:  ‘Courts will not allow the hospital to release the baby, Charlie Gard, into the parents’ custody so they can travel to try an experimental treatment.’

Support for Charlie Gard has gone global.

Support for Charlie Gard has gone global.

The difference is that in the US, law begins with parental rights.  Here parents’ rights come second to the enforcement of parental responsibility to raise their children as the state sees best.  This is coupled with the nebulous ‘best interests of the child’.

Consequently, Great Ormond Street and Justice Francis have taken to themselves the parental rights of Mr Gard and Miss Yates.  Such a statist, secularist position simply cannot be right.

The Bible says: Psalm 127:3 Lo, children are an heritage of the LORD: and the fruit of the womb is his reward.  It does not say those children are a heritage of the State.  Parental responsibility is grounded in parental rights.

People worldwide have given Charlie Gard’s parents huge financial and moral support.  Plainly the Biblical position strikes a chord in the public mind.  The parents have the money.  They are not asking the NHS to pay for anything.  Why can’t they go?

The case goes back to the High Court on Thursday.  Let us pray for a righteous outcome.  If not, the law must change.

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21 comments

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  1. V37

    Hi,
    My wife is an ex-midwife, and has followed this case from a medical viewpoint. She feels that it’s the hospital that’s got it right in this case, and the parents who don’t know what’s best for their child.
    If their case is lost, it might be to their child’s advantage, and hopefully monies raised will go towards good charit(y/ies).
    In One,
    Dr Steve H Hakes (PhD)

    1. Stephen

      Hi Dr Hakes. Thanks for that insight. The hospital may well be right. My point is the parents should decide what is to be done, not the state. The hospital should not prevent baby Charlie from being transferred.

      1. Rox

        It’s interesting that Donald Trump is offering to help pay for the baby’s transfer to and treatment in the USA (or perhaps not, it’s never clear what he means, and he can always change his mind).

        But he wouldn’t pay for it if Charlie was American, would he ? In fact, he is totally against the idea of a national Health Service, and (bizarrely) Americans of his ilk are using this case to “prove” that our NHS is no good *. If Charlie was poor and black and had polio in Arkansas, he would get virtually nothing — less still if Trump could fully get his way.

        This comes down to an awul practical truth. Neither the UK nor the USA can really afford to spend huge sums of money on a single case where the chances of a happy life are so low, and they should not do so, just because it happens to have got into the newspapers. Sensible parents do listen to what the doctors say, and (to be brutally but absolutely realistically honest) they could have another baby. Charlie is irreversibly brain-damaged, and the treatment which might help him in some way (being touted by the Vatican as a miracle, as well as by the USA as fine American technology) has not even been used for similar conditions on mice. Supposing newspapers decided to run the story that foreign doctors were experimenting on Charlie ?

        So they succeed. Then the parents end up with a seriously brain-damaged handicapped child to look after at home. Is this something they would really be better off with ? So far they may say they love him and would miss him, but he’s been in hospital. Is the seriously brain-damage handicapped child happy ? It’s difficult to say. I would much rather have a cat, myself, so long as it was healthy and happy, which you can easily tell with cats.

        I’m sure the NHS and the kind donors could find other valuable things to spend their money on rather than prolonging the artificial life of Charlie, because let’s not forget he would have died long ago from natural causes if they had not been doing their best so far, which they have now decided is all that they can do, it being time to give up.

        * Because they say there is in the UK one single health provider, so no competition to give a different opinion. In the USA you can always get a different opinion if you have the money, no matter how hopeless your case. There is one charlatan exposed by the BBC who specialises in curing cancer on his luxury ranch (which would be illegal in the stuffy old UK). These Americans seem conveniently unaware that private medicine has NOT been outlawed in the UK, of course. They would then say that there is only one medical insurance provider. You can even pay for private medical insurance in the UK if you want to, and many do, but most can’t afford it and/or have no wish to.

        1. Stephen

          The parents are not asking the NHS to provide any treatment at all. They have the money to take Charlie to America, where a doctor thinks he could help.

          1. Rox

            But they have done so far. However, I was generalising on this principle too. Charlie is not unique .

            The parents have now walked out of the hearing, and to be sure of satisfying them (the parents, not Charlie) the judge has adjourned it. Who is paying for the prolonged “treatment” ? Is it good value for money for anybody ?

            I know that sounds crass, but the NHS does consider value for money. It has to.

          2. Stephen

            The NHS is paying for the treatment at Great Ormond Street. The parents have raised a million pounds to take Charlie to the States, eliminate his burden on the taxpayer, and pay for his treatment there. Take statism out of the equation, and it’s a no-brainer, IMHO.

  2. FruFerg

    This is another of those distressing cases (distressing for ALL concerned in the care of Charlie) where the people who have parental responsibility are at odds with those who have medical responsibility for the child.
    See fullfact.org The courts and children’s medical treatment

    It is very hard to look objectively at the situation when you are a parent and you have a three month old baby in your arms whom you have grown to love with all your heart. It is very understandable that Charlie’s parents want to do everything they can for this little bundle of joy they see day after day.

    I am a medical doctor, and I have recently lost a dear sister. Only in the last few weeks before she died would I accept that the illness was terminal. The prognosis from the start was awful, but I refused to believe it – and I have the knowledge! I know how they feel.

    I can assure you that Charlie’s parents would have been involved in every decision at every stage of his life, and I am sure that the situation would have been explained in full to them when it came to the eventual realization that he was in fact not going to survive. At the moment he is being kept alive artificially on a ventilator. His brain is damaged. His major organs and lungs are failing. His muscles are weak and will get progressively weaker. Experimental treatment will not reverse the brain damage even if (and is’s an enormous IF) it would help him at all. As doctors, our duty of care is NOT to strive officiously to keep alive. Death is a sad but inevitable end for each one, and in Charlie’s case it would be a kindness to end what is already a living death.

    As a Christian, I am convinced that he will go straight into the arms of Jesus. Perhaps Christian Voice should be encouraging people to pray for his parents’ salvation rather than fight for their ‘rights’.

    It’s a heartbreaking decision for any parent to make, but wisdom is needed here. This is NOT a case of the state taking over parental rights. This boils down to a simple conflict of emotion (parents’) versus experience and knowledge (medical). Unfortunately, with mass media and mass ignorance, such situations get completely out of hand and objective truth is swamped under an outpouring of public sentimentality.

    1. Stephen

      I’m sure we should be praying for their salvation. But that is the ministry of the church. The ministry of the state is to uphold justice. It is not an either/or. And the state has gone beyond its God-given remit to uphold justice in this case. Similarly, the hospital has gone beyond its function of ministering healing to the sick. And do you know, we all make decisions as much on emotion as on cold hard facts. That’s because we are human.

    1. Mark Jones

      very true Mr Jenkins

      1. Rox

        The real difference is between a human being who is conscious of the outside world, and a dependent animal which is only potentially a human being, or in Charlie’s case, not even that.

        Somebody is going to ask if I would be in favour of euthanasia for a baby who has been born but turns out not to be in most people’s view a normal viable human being. Yes, I would be. As Jenkins suggests, the mere stage of birth doesn’t really make any difference in such cases.

        I wonder what FruFerg and V37 think of my analysis .

        1. JohnAllman.UK

          @ Rox

          “a dependent animal which is only potentially a human being”

          What non-human being has the potential to turn into human being? There is no such animal.

          Are you preaching a doctrine of “ensoulment”? From which religious perspective do you teach this? Ensoulment isn’t a Christian doctrine.

          Ensoulment isn’t a scientific hypothesis either, capable of being tested using a well-designed experiment. The doctrine of ensoulment is superstitious mumbo-jumbo, and nothing more.

          1. Rox

            The only thing which is not a human being which has the potential to turn into a human being is a human embryo or foetus, but also a human egg. One could argue that healthy new-born babies are not really human beings, although we (especially the mothers) like to think they are, and this point of view is essential to their survival.
            However, they aren’t really conscious of their surroundings and of the meaning of the signals entering their brains, never mind being capable of writing sonnets, let alone living the life (at that age) of a monkey or even a cat (not even a kitten). It seems that Charlie will never have any such consciousness, even if the treatment is “successful”, because he is so brain-damaged that his brain lacks any features which would mark it out as “human”.

            What about the eggs ? If a woman remains a virgin, is she murdering her potentially human eggs ? Do human eggs have no soul? Do they gain a soul when they are fertilised ? I have no idea. I leave it to you to add the S word into my account where appropriate if you so wish, or not do so if you don’t wish.

          2. Stephen

            Oh, don’t be silly Rox. In th ante-natal clinic, a mother is told not to smoke ‘for baby’, not ‘for embryo’ or ‘for foetus.’ IN fact foetus is Latin, as I understand it, for ‘young one’. But the language tries to dehumanise. An egg is not a person. Are we venturing into schools of thought of the Greek philosophers? And a soul is simply your living, breathing entity. There is nothing ‘spiritual’ about it. You don’t receive a soul. You just have one. How many angels can dance on the head of a pin? Silly. Waste of time.

  3. Epistle

    The legal principle that the Judges are deciding this case on is “what is in the best interest of the child”. Leaving the facts of this case aside, one can imagine a case whereby a child would be dead but for medical intervention, have no prospect of living with any quality of life, being effectively brain-dead, but is suffering in extreme pain. The parents in this putative case, against all medical advice, seek to insist in continuing the life of the child in its vegative state and hence continue its suffering. Guided by the legal principle, the court should, I believe, have the power to override parental objection and order that the child to is allowed to die. The parents’ rights to determine what happens to a child is negated, as it is clearly not in the child’s best interests to be kept alive. Rationality and objectivity should ultimately be allowed to rule over emotion.
    The facts in this case are much more nuanced. The child appears to respond to stimulus and there is a possibility, if slim, that experimental medical intervention can help. The parents’ wishes must be given considerable weight in any decision, but should not override completely an objective analysis of the child’s best interests.

    1. Stephen

      Again, I think your final comment shows how much we have been influenced by the statist doctrine that judges, not parents, will decide the child’s best interests.

  4. Epistle

    Are you saying, Stephen, that parents should always, no matter what the circumstances, have the final say over their child? If so, much harm would follow, Not all parents are good, competent parents. Some parents abuse, injure and even murder their children. The Law surely needs to have power to act in such cases. Being a parent should not be the sole arbiter of a child’s best interests: the strong legal presumption should be that the parents opinions take precedence, but not where they are clearly flying in the face of the facts. The child has inherent legal rights of its own – in my view whether born or not. It is rarely in a child’s best interests that it is aborted, no matter what the parents opinions. Should parents have the right to kill an ailing child against medical advice that it would with care be likely to have a satisfactory quality of life? Surely not.

    1. Stephen

      Obviously there is some cross-over to what passes for child protection. Plainly parents should not be allowed to abuse their children. But here, the hospital says Charlie is better off dead and the parents say we want to give him a chance of life. No-one can possibly accuse the parents of abuse. Let’s start from the premise that it is parents, not the state, who can be presumed to have their child’s best interests at heart.

      1. Rox

        Without the intervention of the hospital, he would have died a long time ago, and many a priest or minister would have told the parents that it was better that it was so .

        1. Stephen

          Well, they would empathise certainly, but venturing that sort of opinion? I’m not so sure.

  5. JohnAllman.UK

    The principle at stake in this case is similar to that in the other medical ethics news story this week, to do with Conversion Therapy or Reparation Therapy.

    In both cases, there are experimental treatments in their early days that have certainly never been clinically trialled, proving them safe and effective. Certain people want to give the new treatments a chance, having (they feel) nothing to lose.

    In both cases, other people, are quite doctrinaire in their conservative views that these new treatments won’t work, so shouldn’t even be tried. Moreover, they insist, being dead, or being gay, as the case may be, isn’t so bad that people shouldn’t welcome and celebrate each.

    The people who want Charlie Gard to die without giving the new treatment a try, and the people who want to prevent gay people who want to change from being able to risk controversial and unproven experimental therapies, both go to law, to lord it over the people who want to try the treatments anyway, whilst the public cannot understand why it cannot be an individual decision, whether to give the respective experimental treatments a try.

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