Yesterday London Live invited Researching Reform to discuss the distressing decision to take Charlie Gard, the baby suffering from Mitochondrial Depletion Syndrome, off life support. The decision was made yesterday by Justice Francis in the family division, after reviewing expert medical opinions in the case. Charlie’s parents had been fighting to get pioneering treatment for their son, which may have prevented him from dying.
We spoke to London Live about the ruling, and why, despite the arguments put forward by medical experts, we strongly felt the decision was wrong.
Mitochondrial Depletion Syndrome is a rare disease which affects the brain, kidneys and muscles. There are currently only 16 known children carrying the symptoms of the disease, and of those none are as severe as Charlie’s. The pioneering treatment on offer is available in the US, and has helped to treat patients with this condition by reducing the symptoms. And whilst medical experts in the UK and the US all agreed that the treatment if given would not be able to reverse Charlie’s brain damage, no evidence currently exists to suggest that the treatment would not be successful in saving Charlie’s life, or would not improve his quality of life as it stands now.
The entire premise relied upon to remove Charlie from life support was based on subjective opinions by medical experts who admit that the effects of the pioneering treatment on offer are unknown.
Arguments for denying Charlie treatment are highly questionable. Doctors took the view that although no evidence of Charlie being in pain has been registered by diagnostic machines or professionals themselves, they concluded that further treatment elsewhere could cause him to suffer. Again, a purely subjective observation and one which contradicts the parents’ who felt that Charlie was not in any pain and with a greater level of brain function than suggested by professionals.
Bizarrely, a doctor involved also called the parents a “spanner in the works” for trying to seek out what could be potentially life saving treatment.
The email reads: “The spanner in the works has been a parent-driven exploration of all alternatives internationally leading to a new specialist in New York who has recommended a three-month trial of nucleosides.”
When asked about this choice of wording, the doctor told the court that it was just a “clumsy” turn of phrase, saying: “I was trying to suggest that our previous decision to take this to the court as urgently as we could was being held up by something being explored which needed to be explored.”
Not convinced? Neither are we. Professional arrogance is a huge problem in the medical sector, and no doubt having a US doctor muscle in on the diagnosis and decision making process would have put a few UK doctors’ noses out of joint. It’s something we’ve seen in other high profile cases, such as the now infamous story of Ashya King, whose parents took him abroad for pioneering treatment against UK doctors’ wishes. (Ashya is now cancer free and back at school). In this case too, UK doctors played down any success the treatment might have and tried to convince the court that the treatment would not work.
In Charlie Gard’s case, medical professionals told the court that even if treatment was allowed, the end result would be so minimal as to be outweighed by what would remain a very poor quality of life. A view not based in any tangible evidence, because treatment on someone like Charlie has never been attempted.
The anti treatment lobby ignore two fundamental points: no one actually knows what the end result of the treatment might be. There is also the possibility that in a few years’ time we may have pioneering treatment which can reduce the symptoms of the disease further, and even reverse the brain damage it causes. If Charlie is still alive, he can benefit immensely from that development.
Given that the parents have managed to raise all the funds necessary to have the treatment, and that medical professionals have conceded that Charlie could travel to America for the pioneering therapy, it seems unbelievably reckless to deny Charlie and his parents this chance.
A chance every parent would take for their child.
Researching Reform 
This is the problem throughout all professionalism. Whether doctors, scientists, researchers, Lawyers, police, social workers, even mechanics. The voice of a professional is always protected in court and they can do anything and only their thoughts and ideas matter.
The UK in particular, has raised the level of professionals to that of God. They are infallible, right up there with the Pope. Either we destroy their power and prestige and supposed sincerity, and authority or we will be destroyed by them. Medicine/Medical practice is all about killing people, not healing them. And they take our money will screwing us over. The younger people die, the less chance they have to learn and get on to the system and its lies and myths. They want the population down from 7 billion to 500 million. that is the elimination of 6.5 billion people. Some thru prevention, some thru poison, some thru war, some thru starvation, some thru disease, till most of the world is gone. The brave new world! Ain’t it great!
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Very strong words there, but i can see where youre coming from.
the System of know it alls must be challenged at all times otherwise we are doomed.
i feel Great Ormond st have make a Grave mistake in getting a Judge to decide the fate of this little baby on their behalf.
they should not have taken this action and it will have now damaged their shinning reputation as we all once knew it.
i will never see this hospital in the same way ever again. i am bitterly angered by what they have done here and i hope it comes back to Haunt them. totally Despicable.
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As a Dutchwoman who previously lived in the US and is now based in Britain (in Ashya King’s city, I might add), I too feel that the medical profession generally still has the ridiculously old-fashioned god status in Britain. I’ve for instance been ridiculed by an ophthalmologist for asking about possible side effects of a medication, only to find that it did cause serious problems for me. (Thankfully, we have the internet now, which can help us solve such problems and bypass physicians who don’t like assisting emancipated patients.)
Having said that, Charlie Gard’s case – heart-breaking and difficult – also has a strong element of the opposite. We are now in an era in which doctors are increasingly often perceived as “playing God” when they do NOT do everything in their power to prolong a baby or an adult’s life artificially, no matter how high the cost to the individual in question.
Charlie Gard’s case is not comparable with Ashya King’s case, however. Charlie was born with a condition that normally means the infant won’t live very long. One can ask whom prolonging Charlie’s life benefits, Charlie or his parents. This will sound incredibly harsh to many and I understand that. On the other hand, allowing Charlie the experimental treatment in the US could yield very important information that may not benefit Charlie but could benefit future infants with mitochondrial DNA depletion syndrome. Could that be worth it? Hard to say.
Ashya King, by contrast, developed a brain tumor. Even with the traditional treatment, Ashya had a fighting chance and treating Ashya as well as possible was certainly going to benefit Ashya. And it has.
One of the problems is that we badly need global regulations for all kinds of situations and that people from all sorts of backgrounds all over the world can agree with. The lack of it currently not only causes medical tourism but also the kind of heartbreak we now see in the Charlie Gard case. Put yourself in the parents’ shoes. Most of the hurt and upset for them is currently coming from the legal process. It might be possible to avoid this if we had much more clarity about what to do to limit harm to such a child as much as possible. Such regulations will have to be a compromise, obviously, and can never avoid heartbreak ( but heartbreak is also a normal part of life).
Conditions like Charlie Gard’s also play a role in the new eugenics, currently particularly in the selection of embryos for IVF procedures, a rapidly growing practice, and soon in the creation of designer babies. It is an incredibly difficult topic that is screaming for attention. I just wrote a rather provocative essay on it. It is called “We need to talk about this.” During the writing, I grew very depressed a few times, because it is such a hard and dark topic. But we really do need to talk about this, sooner rather than later.
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This needs sharing everywhere. I hope this little boy gets the medical help he needs. Thoughts are with his family x
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Very well written and exactly what I suspected. Charlie is an example.
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“it seems unbelievably reckless to deny Charlie and his parents this chance.”
Yes it is unbelievable and absolutely sickening to think they could stand in the way of the parents who are just trying to give their baby some glimmer of hope. how could anyone do such a thing. its not what we expect from other human beings. we are all about Life and Survival set by Natures default. never give up and never give in. we were Born to live.
Great Ormond st have made a Grave mistake in getting a Judge to decide the fate of this little child on their behalf.
they should not have taken this action and it will have damaged their shinning reputation we all once knew.
i will never see this hospital in the same way ever again. i am bitterly angered by what they have done here and i hope it comes back to Haunt them. totally Despicable.
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I understand why Great Ormond Street felt the need to take this to court. They have limited funds available and do not believe that Charlie’s life can be saved or improved and that the kindest thing to do is turn off his life support system. I am guessing that this is the same decision they make when advising other parents to turn off the life support for their terminally ill children. There is no way the NHS or the charity funding GOSH receives can justify the expense of the treatment in the USA for Charlie as the outcome is not expected to be that great.
On the other hand, I can see exactly why the parents would want to fight for every chance they have to save their child and as they have raised the funds themselves and won’t be taking a penny from the NHS or GOSH, it makes no sense to me as to why anybody would stop them from taking Charlie abroad for treatment. If it doesn’t work, then at least they have tried.
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If this baby does not receive the methylcobalamin active vitamin b12 he needs there is a case for premeditated murder against all officials including judges. https://www.hindawi.com/journals/aurt/2013/609705/
http://www.sciencedirect.com/science/article/pii/S1525505014004120
http://www.drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle
http://suzycohen.com/articles/methylation-problems/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4073259/
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This sort of low empathy behaviour is what we expect nowadays from the self serving child abusing psychopaths who dictate over us. It’s a shame we can’t assert our constitutional laws and get rid of these ‘illegal’ jury-less courts, and punish the criminals who created and run them. Look at our ‘subject’s rights’ in the English Bill of Rights 1688 “There are currently no known outstanding effects for the Bill of Rights” http://www.legislation.gov.uk/aep/WillandMarSess2/1/2
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Reblogged this on World4Justice : NOW! Lobby Forum..
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Firstly , the Child Protection court and the Family Court are failing to declare an interest in methylcobamin , an active form of vitamin b12 which was reserved for the private sector in the child protection report . Many doctors left the NHS and have been able to take advantage of the methylcobalamin monopoly and cash cow which was created and are now able to charge upwards of £100 per shot for it , when it should only cost around 70p per dose . Due to the generational use of nitrous oxide gas which switches off the body`s ability to utilise vitamin b12 and this can be permanently causing pernicious anemia , it has lead to babies being born with an inborn error of metabolism , just as happened in the holocaust . This gas was first isolated in 1772 , four years before the birth of the Illuminati . Vitamin b12`s job is to switch off cancer cells and to maintain RNA and DNA synthesis ……so …..when people are given nitrous oxide gas and vitamin b12 lowering pharma drugs and vaccines over several generations , it causes genetic mutations which cause microcephaly , MS , Cancer , inborn errors of metabolism and CJD along with many other needless illnesses and disability including mental illnesses and learning difficulties . The judgement was based on floored expert opinion .
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4073259/
https://www.hindawi.com/journals/aurt/2013/609705/
http://www.sciencedirect.com/science/article/pii/S1525505014004120
http://phoenixrising.me/research-2/glutathione-depletionmethylation-blockades-in-chronic-fatigue-syndrome/a-simple-explanation-of-the-glutathionemethylation-depletion-theory-of-mecfs-by-rich-von-konynenburg
http://www.mdpi.com/2077-0383/6/2/18/pdf
http://austinpublishinggroup.com/pharmacology-therapeutics/fulltext/ajpt-v2-id1015.php
http://drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle
https://chriskresser.com/b12-deficiency-a-silent-epidemic-with-serious-consequences/
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Finally words of wisdom ! Surely to take ‘the chance’ that the life of Charlie Gard can be saved and improved is worth a chance ? Ask any parent to dispute this. If this precious child was the relative of any of the doctors whose opinions were sought, or indeed of the judge, I’m sure we would not even be discussing this !
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If I was a parent, I would be fighting to keeping my child alive, thoughts are with Charlie’s family, we are with you every step of the way.
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Let Charlie’s parents have that chance take Charlie you know him better the anyone I believe parents kinow there own child he deserves a chance and we have helped this be pissiable because we believe also he has a right a chance even if they say 1 percent chance it’s worth it go go go !!!!
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I am absolutely DISGUSTED at the attitude of “professionals” if there’s a chance of helping this baby we should be taking it, they have raised enough money and therefore should be allowed turning the machine off should not even be questioned this is a precious life that could be helped, the treatment is there for Charlie, there’s no harm in trying. I would class this as murder
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Xx
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Here is the email I sent to the Morning show over there: I am in the US(Texas) feeling so helpless to help as I watch Charlie’s journey unfold.
Thanks to facebook I was able to watch a few clips of your show. Honestly, I think you missed some critical points.
1) Mitochondrial Disease(even the same known mutations) have incredible variables. What might kill one patient, for the next who is worse off they may stabilize and thrive. After being in the Mito Community for a number of years because our daughter has a Mitochondrial Depletion Syndrome(milder thus far then Charlie, but from birth)I have seen more instances of patients creating their own prognosis then following what the Drs. felt they should. We refer to our loved ones as Snowflakes, no two are alike no matter what the test results indicate. Mitochondrial Disease is highly unpredictable.
The various Mito Specialists have said repeatedly, that they are learning about Mitochondrial Diseases and it is a New Frontier. In the bigger picture no matter what tests show, very little is known. I could take Abby to 10 different Mito Specialists who very well could have different opinions. This doesn’t make them bad Drs, it indicates that we don’t have enough data to have a combined knowledge to properly treat all patients. It wasn’t even until a couple years ago they they even had a widely accepted diagnostic criteria. Even as we speak with the ability to find common genetic mutations the diagnostic criteria is changing again. So if the diagnosis isn’t an absolute yet, how can a prognosis be?
Since Mitochondria fuel so much of the bodies energy, periods of growth, illness and other stressors can be very hard on the body. Our daughter even now at age 22 when she catches a cold might sleep 18 hour days for weeks until her body can “re-energize.” She stabilizes and moves forward. She struggled in infancy and the toddler years and stabilized through most of childhood until puberty which is another period of high energy need but stabilized a couple years ago.
While Mitochondrial Disease is not curable at this point, many patients will benefit from significant supportive medical interventions throughout their journey with this disease. They often get quite ill,(life support)and in the US they are given that support if that is what the patient and family want. I cannot count the number of patients who have walked the brink of death and then stabilized. There are multiple treatments that show great promise in stabilizing patients and as we speak countless patients have benefited.
2) As a parent to a disabled daughter, this story isn’t about just Charlie, this is about equal rights to life for the disabled.
Whether Charlie is neurologically impaired at this point hasn’t been proven, just “suspected” based on a group of Specialists. (Recent research was released here in the US a few weeks ago that found 88 percent of patients who seek a second opinion get a very different diagnosis/prognosis) He isn’t receiving pain medications and if the Drs. thought for a second he was in enough pain to warrant ending his life, they would have addressed that via medication a long time ago. The fact that the Trach was brought up as too painful, well thousands and thousands of people live well with ventilators, do we disconnect them as well? We aren’t speaking of a sick puppy that should be saved from suffering, we are talking about a human.
3) Without brave families like Charlie’s family, we would never get cures for anything. I am sure the first few pediatric patients who received chemo were probably poisoned to death because it took trial and error to get dosages right, we have come so much further then that today and the cutting edge interventions are so much safer, why so quick to deny it to the child who needs a chance most?
4). In the US we have cases where Drs. take families to court for not trying hard enough to prolong life. We have cases of Drs. trying to disconnect patients who are brain dead. We haven’t yet had a case(at least widely known to the public) where the Drs. want to kill a patient because he might be neurologically disabled or might not like how a trach feels.
My daughter and I have talked about this case a lot. She said what if I got really sick and needed the interventions that Charlie needs right now, would Drs. here try to copy what the Drs. there in the UK are wanting to do? Pull the plug on me?
There are global implications in the decision that was allowed by the people of the UK to be made by your Government and Drs. There are far reaching implications to your citizens. Which child will be euthanized next? What level of neurological disability should be deemed unworthy of health care, of life? The child with a huge smile who cannot walk? The baby who may never write her name but is loved beyond loved for the joy she brings? A child with a chronic pain condition? Patients who need ventilators and trachs? Maybe a cousin, or a friend’s baby..
As an American this case made me realize how precious our healthcare system is and how as Americans we need to fight much harder to protect ourselves from the government socializing it and thus deciding who lives and who dies.
Our hearts go out to Charlie and his brave parents, when they make it to the US for treatment we hope to meet them.
Americans love life and hold hope dear, we hold ALL life precious, we don’t kill our disabled.
Kind Regards,
Diane Neuman
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No REAL Justifiable reason why Charlie should be denied this Chance. He is in no pain, on no painkillers. It’s medical arrogance and politically driven. Don’t envy another countries talent. Embrace it. Learn from it. 💙💙💙 Remember you work for the people. We don’t work for you. Your profession is to save. Not pick and choose who to save. You are playing God. This is an extremely unreasonable and backwards decision. The country will not allow this
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I would of thought it’s the parents decision to decide if their child lives or sadly dies. These parents are asking to give their son a chance at no cost to the NHS. Although some may agree with the court to let him go without life struggles, which is a fair argument but no UK court will allow an adult suffering with a terminal illness with no quality of life peacefully end their life as they wish so what gives them the right to end this little boys life without trying a treatment that may or may not work.
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Please just let Charlie go. What has that judge got any business telling them that they can’t go to America. What if she had a child that needed this treatment in America. She would try her hardest to get her child to America
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