Wednesday, 5 July 2017

Charlie

I'm sure many of you know exactly to whom the title of this post refers.  For those of you who don't, I'll give you a hint: Charlie isn't a patient of mine.

Figured it out yet?  No?

Several people have emailed to and/or tweeted at me (I still hate that I tweet "at" people.  It seems violent somehow.), wondering why I haven't blogged about Charlie Gard yet.  Well, I haven't done any request posts in a while, so you people are finally getting your wish.

For those of you who have no idea about whom I'm talking, I'll give you the short short version.  Charlie Gard is a wee British lad who was born with an incredibly rare genetic disorder called mitochondrial DNA depletion syndrome, in which there is a drop in mitochondrial DNA in affected tissues (muscles, brain, and liver).  The affected cells can't produce the ATP they need to survive, and it typically results in death in infancy or early childhood.

As if that weren't bad enough, Charlie was unfortunately diagnosed with an incredibly rare variant of this incredibly rare disease, called RRM2B-related mitochondrial disease.  There are only 16 reported cases of this variant, and all of them have died in infancy.

Like all children with this disease, Charlie seemed like a healthy, normal boy when he was born last August, but he missed some developmental milestones, so his parents took him to the hospital when he was two months old.  Since then he has been on a ventilator, unresponsive and unable to move.  Ever since his parents received the devastating diagnosis, they have been in a legal battle with the hospital over how to treat Charlie - A) continue with aggressive treatment, or B) stop fighting and let nature take its course.

Sigh.  Here we go again.  Another tragic story of a child taken too soon.

Charlie's parents aren't ready to let go, and it seems they have been in and out of the courts every few months.  An American neurologist (who still has not been named) has averred that Charlie is in the terminal stages of his disease, but he has offered an experimental treatment called nucleoside bypass therapy, which has never been used for RRM2B (though it has had some success with a less-severe variant called TK2) and reportedly costs £1.2 million.  His parents set up a GoFundMe account that raised more than the required amount, but Charlie's doctors at Great Ormond Street Hospital argued that the therapy is untested and has risks that would outweigh any potential benefit.  In April 2017 the courts decided that the hospital could turn the ventilator off and let Charlie pass in peace.

Undeterred, Charlie's parents kept fighting.  They took the case to the Court of Appeals, which upheld the initial ruling in favour of the hospital.  The Supreme Court then heard the case, which again upheld the ruling.  They took it all the way up to the European Court of Human Rights, which just a few days ago upheld the ruling yet again.

Since the ruling, a children's hospital in the Vatican has offered to take Charlie in as has an American hospital, but his doctors have refused to allow him to fly.  Prime Minister Theresa May has agreed with the doctors, and Charlie remains at Great Ormond.  Charlie's parents have since asked his doctors to discharge him, so that he can die at home in his crib with his parents.  But he still remains where he has been for nearly his entire life.

If this is all sounding familiar to you, then you're probably aware of the similar case of Jahi McMath.  However, the two stories differ in one major way.  But how?  After all, just like Jahi, Charlie can't move, he can't cry, he can't eat, he can't even breathe on his own.  Right?  So what is this major difference?

Unlike Jahi, Charlie can feel pain.  That makes all the difference in the world (in my mind, at least).  Charlie has the capacity to feel discomfort from the pokes and prods, the uncomfortable feeling of a ventilator pushing air into his lungs every few seconds, endlessly.  And with no capacity to improve.  Ever.

But just in case you thought this was a mundane story, it doesn't stop there.  Oh, no.  Donald Trump, of all people, has thrown his hat into the ring.
I'm not sure what Trump thinks he can do for Charlie, but I don't think a spray tan would help.

So . . .

With that very long-winded summary of the past 10 months of Charlie's life, I address the requests I've gotten, all of which have been essentially the same - "Doc, please weigh in on Charlie Gard!"

Well, you asked for it, so here goes:

I agree with everyone, and I disagree with everyone.

Thanks everyone, goodnight!

. . .

Ok, ok.

But seriously, I can honestly see everyone's point of view, and there is absolutely no good answer.  On the one hand, the doctor in me sees the futility in any attempted heroic effort, coupled with the fact that Charlie can feel pain though has no way to express it.  On the other hand, the father in me wants the parents to fight for every minute they have with their son.  But on the other hand . . .

There is no other hand.

The sad fact is that Charlie has a universally fatal and incurable disease.  The proposed treatment in America is experimental at best, has only been used a few times on a related disorder with modest success, and has never been used on anyone with such an advanced case.  There is no reason to think it will be able to reverse Charlie's terminal case, and every reason to believe it will simply cause him to endure his pain longer.  However, I can see no reason why the hospital would deny Charlie's parents' request to let them take him home.  They should at least grant them that one final wish.

I can't really say what I would do in this situation.  I'd like to think that my rational side would take over and let my child go peacefully, but just like I tell my patients, I can't guarantee it.  How can anyone think they know what they would do with such an impossible quandary?  What I can guarantee, however, is that any bullshit offer from Donald Trump would be unabashedly and vehemently rejected with alacrity and aplomb.

I welcome any respectful comments and suggestions.  Tell me I'm wrong, tell me I'm right.  Just keep it respectful.

180 comments:

  1. Serious question time: You really tweet "at" people? I always though it's "to" people. But I dunno. English is weird.
    And so is Trump. Just... what is he offering? Is an American president offering the idea of disrespecting/ignoring the court ruling of European courts?
    Anyways, the story is indeed tragic. I feel sorry for both Charlie, the parents and almost everyone involved. I wonder who's the neurologist, though.
    Thanks for the post.

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    1. Serious reply: you tweet "at" people because of how the reply function was created on Twitter. When it first began, there was no reply or user-tag function, so users began doing it themselves with the @ symbol. Eventually Twitter officially adopted it.

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  2. You sound like a pretty good doctor to me.

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  3. My guess is the real reason the hospital won't release Charlie is because there is a 100% chance his parents would try to smuggle him to America for further futile treatment.

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    1. I thought that too, but it's not like they can just book an airline ticket and carry him as a lap baby. It would probably take a specially-equipped plane to take a critically, terminally ill infant on a trans-Atlantic flight.

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    2. I think they would need an air ambulance like they used for baby Israel.

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  4. This is so tragic. I have been following this story. They say Charlie is in the terminal stages. He will probably pass away without removing the ventilator.
    What causes this awful gene mutation?
    I follow you on twitter doc, I have no followers myself.

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    1. Like just about every mutation, its random variables.
      Connor

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  5. Trump tweeted what he did merely to increase his standing in US polls. It's not like he really cares.

    The doctor in the US that had offered treatment withdrew the offer. He was unaware that Charlie was as sick as he was and once he found out just how sick Charlie was he said that treatment isn't going to help him. I'm not sure what his parents are holding out for now, given that the treatment he was going to have isn't being given to him anymore due to how very ill he is. His parents are now saying that the hospital will not allow them to take him home alive so he can die in their arms at home. If he's taken off support he'll die before they can get him home so they are requesting that his ventilator and the other equipment and a nurse (or someone who knows how to handle the equipment and can give the child medication if the child is in severe pain from the trip) make a trip in an ambulance to get him home so they can turn off his equipment in their home and he can die there. They are fuming that the hospital is saying no to that and are requiring that their son die in the hospital.

    I understand why they want him home to die at home, but I can also understand why the hospital doesn't want to do it that way. I personally would not be able to handle the risk that I'd put my child in more pain and would prefer he die in my arms, full of morphine, at the hospital.

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  7. Thanks, Doc, for this.

    It feels worse now that I know their son is feeling pain through all of this. I just hope he can be transported home to have his life support shut off so he can die in his own room in his mother's arms.

    Why is it that science can invent technology for IVF & fetal surgeries in utero but can't create gene therapy that will correct diseases like this so babies like Charlie can live? Didn't they finish mapping the human genome back in the aughts? Wasn't that knowledge supposed to allow us to cure nightmare diseases like RRM2B?

    I pray that Pres. Cheeto doesn't go for the cheap publicity stunt & offer to fly Charlie here on Air Force One (which prolly has a medical suite as good as anything at Johns Hopkins) so that neurologist can treat him...

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    1. This is way more complicated to cure than it even sounds.

      Animal cells are incredible little machines which demonstrate the most amazing "Heath Robinson" type systems that result from an evolutionary past where "good enough" is the only test.

      You are quite right that human nuclear DNA has been sequenced (fun fact: my wife's PhD supervisor received a knighthood this year for his work on speeding up human DNA sequencing from taking years to a matter of hours).

      However, cells are so crazy-mad that that is not actually the whole of the DNA in a cell. Somewhere back in evolutionary history some progenitor seems to have captured, engulfed or somehow formed a symbiotic relationship with a bacteria or similar type of miniature cell. These no longer have any independent life but live on as "organelles" within our cells. Like a tiny cell-within-a-cell. Amazingly, mitochondria, which are one of these types of organelles still have their own DNA which is not part of the main sequence. These mitochondria are the power-plants of the cell and without them the cell will run out of energy and die. Poor Charlie has a problem with the DNA in these mitochondria which is why his cells are dying.

      I'm quite sure mitochondrial DNA has been sequenced but these tiny organelles are so numerous, so tiny and so inaccessible that fixing them would be incredibly difficult.

      Interestingly, a human egg has mitochondria but sperm does not so all of your mitochondria came from your mother and your mother's mother etc.

      I believe that if a woman has known mitochondrial issues then they can in fact take the nucleus from her egg (which has 99+% of her DNA) and put it into a donor egg with good mitochondria. The egg is then fertilized and the child actually has 3 genetic parents: 49.999 etc% of it's DNA form the father 49.999 etc% from the mother and a tiny, tiny percentage of mitochondrial DNA from the egg-donor mother.

      Isn't science amazing!

      Ugi

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    2. I see your Heath Robinson system & raise you a Rube Goldberg machine.

      Wait, what? Your wife's PhD supervisor was Shankar Balasubramanian? How cool is SHE to have worked under him!

      I remember organelles & I know a little about mitochondrial DNA. And I know human genes are mad complicated. I guess I was naive enough to really believe that mapping the genome would give doctors the power to wipe out lots of horrible diseases & make life better for millions of earthlings.

      Instead, the Human Genome Project ended up being the genetics version of a Tesla. A very cool toy that only ends up being useful to rich people.

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    3. Yes, we have known Shankar for years - I did my PhD on the same project as my wife but under Shankar's old supervisor.

      The issue with DNA repair is the delivery - if you can make the repair to the egg - like the nuclear transplant method I mentioned above - then the repair propagates to the whole body as the cells divide & grow. However, a mature human body has something like 30 trillion cells. Even if you don't need to repair them all, there is no way that you can do one-at-a-time using a microscope. There are very clever tools using things like viruses that can be used to help but in most cases you will know what you would like to do. The issue is doing it.

      Knowing what to do is an essential first step. The tools to make it happen will no-doubt be developed in time but it will be all too slow a process.

      Ugi

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    4. I realize this thread is from several weeks ago, but while RRM2B is required for mitochondrial DNA synthesis, the gene is located on Chromosome 8 of the nuclear DNA.

      Charlie inherited his mutation from both parents in his nuclear DNA, not his mother's mitochondrial DNA.

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  8. I am not sure if they would try to smuggle Charlie away given his severe medical needs, he would need a fully equipped medical aircraft plus a whole bunch of ICU staff.
    What i do suspect is that they would get him home and then refuse to have the life support turned off.
    They are desperate though and there could well be people willing to pony up and get him to America or somewhere where they could try and get the treatment.
    The parents are in denial about how sever his brain damage is claiming he responds to them and knows when they are near (sound familiar?)
    He has frequent fits but the muscles are so weak he doesn't even move, it just shows up on a graph.
    The parents are belittling Great Ormond Street Hospital who are the world's best for treating children, giving the impression they won't be allowed to be with him when he dies when they will be allowed to stay before during and after, however long it takes.
    The doctors are being called nazis and murders and their supporters are generally abusive and threating to the staff.
    The public and media don't realize that the docotors priority is Charlie and what is best for him.
    Their are demands he be allowed to go to America despite the doctor saying in court he didn't realize how sick Charlie was (minimization by the parents methinks)
    At best if they tried the treatment (something GOSH had sent an interim application for permission to try) Charlie would be a guinea pig.
    He would be the first living organism with this variant of the disease to have the treatment.
    Photos of Charlie have been released, most of which are when he was in the lesser stages of the disease though there is one where it is clear that he has profound brain damage.
    His eyes are completely blank and lifeless, there is simply nobody there.
    I think because the word treatment was bandied about, the parents and the public all think treatment = made better. Incurable means there is no cure but treatment means he can be made better and people have written and said he would be able to go to school, to talk and walk, brain damaged but able to have a quality of life.
    I think most people just don't understand just how sick Charlie is, that the damage done cannot be undone.
    Charlie as he is today is as well as Charlie will ever be.
    Everyone seems to be fixated on the parents, what they want, their parental rights.
    Charlie is the forgotten victim in all this.
    There are some things that medicine cannot fix, sadly RRM2B-related mitochondrial disease is one of them.
    The media write about miraculous cures or treatment of other children, some implying is it the exact same disease, others hiding the words similar in the wording, all to give the impression Charlie is fixable.
    The court judgement.

    https://www.judiciary.gov.uk/wp-content/uploads/2017/05/gosh-v-yates-and-gard-20170411-1.pdf

    Also here is some video of Charlie. The one outside was taken a while back.

    it is scary looking at his face and seeing nothing behind his eyes just a deadness.

    http://www.dailymail.co.uk/news/article-4668068/Italian-Charlie-Gard-s-mum-says-Miracles-happen.html

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    1. What makes you say Great Or and Street is the world's best children's hospital?

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    2. Great Or is a leading hospital in all kinds of treatments of rare pediatric conditions. My daughter has a rare disorder and she's treated here in the States,by a doctor who trained under the doctor who wrote the book on her condition and we (us and her doctor) still turn to Great Or for new developments related to her condition. I'd say they're easily in the top 3, if not number one.

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  9. These parents need a chaplain and/or social worker to explain the situation to them. It is HARD to let go of a loved one. I had to do it with my husband and I am a clear-eyed realist with an advance directive in my hand, and it was still awful. My heart hurts for these parents. They cannot wrap their minds around what is happening, and opportunists like Trump and yes, even the Pope (and I like this pope), are not helping. Worse is that Trump is perfectly fine with sentencing tens of thousands of sick American children to an early death by repeal of ACA while feigning concern for a baby whose name isn't "Trump."

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    1. When Trump tweets something spectacularly off topic, it helps to take a look at what he is trying to hide. I'm thinking that this is saber rattling to his "Pro-Life" base, to make it look like he cares about every little child (just not the ones in his own country who will lose their health insurance for life so he and his friends can get larger tax cuts ). PLENTY of us see through him and call him on it with every mindless tweet he excretes.

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  10. As everything in life, the more we hold tight to the ones we love, the more we hurt both them and ourselves. I empathize with the parents especially if it's this is their one and only child, but how much longer do you prolong a person's life for vegetation purposes? What quality will this child have even doing experimental treatments? Working in hospice has given me a countercultural outlook on life. Not to increase the quantity of our years, but to enhance the quality of our years. It breaks my heart for them to have to endure this, but this is life. Life has moments of suffering. It is what it is and it is only our mindset to either enjoy the goodness and peace that life has to offer or prolong the inevitable in a tortuous way. Death awaits each of us. How we live is what we will remember, not how we died.

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  11. I saw an update you apparently missed: the American doctor, upon reviewing Charlie's actual condition, has said that he believes Charlie's condition has deteriorated too much for the experimental therapy to lead to a recovery.

    so short answe: I have plenty of sympathy for the parents - but they need to accept their loss, ifrst.

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  12. Anon, remarks like that add absolutely nothing useful to the conversation at hand. You oughta know that this is REALLY not the time or place to start in with that anti-vaccine crap. Check his Twitter feed -- Doc will eat you for lunch & pick his teeth with your bones behind that dumb shit.

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    1. Vaccines containing aluminum adjuvant such as DTap,HepB,and IPV can exacerbate his underlying condition, that's the reason why I was asking. https://www.ncbi.nlm.nih.gov/pubmed/19084901

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    3. Anon, you will stop this bullshit. NOW. I said to be respectful, and you swooping in with your conspiratorial fuckwittery while this child is dying is NOT respectful.

      Go find your rock and slither back under it.

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    4. Yiy're the fuckwit foreigner.

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    5. no, the fuckwit would be you. Doc is a bastard.

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    6. Gotta love how this pieve of trash not only cant spell you're even remotely close but also thinks foreigner is somehow the end all insult.
      Connor

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    7. Muphry's law: any attempt to correct spelling or grammar will include a spelling or grammar error.

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    8. I only noticed after I posted it (besides punctuation) and as I was posting anonymously I am unable to change it.
      And yes. Murphy's law does work well here.
      Connor

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    9. "muphry's" is the correct citation.

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  13. The nurse in me understands the futility of little Charlie's condition. But the Mom in me is enraged to think that some hospital/court can stop me from trying to get my child this treatment, with my own money. Now that the US option is off the table, his parents can't take him home to die?? Who the f**k do they think they are?

    There are no winners here.

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  14. Thanks for posting your thoughts on baby Charlie. I actually revisited your blog (sorry, it's been awhile) to see if there were any updates on Jahi because Charlie's case reminded me of hers.

    I'm an RN but also someone who's had to make a tough decision about whether to have the docs intubate my 86 year old Dad who was in respiratory failure (again) and most likely unable to tolerate weaning off the vent. At one point, he had a DNR order, but at that time for some unknown reason, the DNR had been revoked. So, it was up to me to decide. Your gut, your heart, your very soul wants to do whatever you can to save your loved one! Emotionally, I was torn. Intellectually, I knew what I had to decide. But, I didn't do it for me. I did it for him. He was minimally responsive but you could see in his eyes he was uncomfortable. And, tired. Really tired. I'm blessed that for just a moment, I was able to step back, and see a *patient* who was at the end of his life. He needed comfort. He needed salvation. He needed peace. And he passed on peacefully and without pain with me by his side.

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  15. Hi Pam.The treatment the parents raised money for would not work and would in all likelihood cause Charlie pain. At one stage, Great Ormond Street Hospital got as far as deciding to apply for
    ethical permission to attempt nucleoside therapy here - a treatment that has
    never been used on patients with this form of MDDS - but, by the time that
    decision had been made, Charlie’s condition had greatly worsened and the
    view of all here was that his epileptic encephalopathy was such that his brain
    damage was severe and irreversible that treatment was potentially painful but
    incapable of achieving anything positive for him.
    The doctor in the USA said as follows: “Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve
    with that therapy. It is unlikely.”

    As for taking Charlie home, the hospital has said no since the trauma of being moved around, all the equipment necessary would cause Charlie pain and distress. Charlie's well being comes first. He would be unlikely to survive the trip given how seriously ill he is.
    Charlie is 'home' He has been at GOSH since he was 8 weeks old.
    He is in a safe and comfortable place where his health can be monitored and he is kept comfortable and pain free.
    bar in mind also we are only hearing the parents version of events since GOSH are limited by patient confidentiality.

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    1. which I have noticed is standard in these cases - the parents tell whatever story they want, while keeping the hospital from telling their side.

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  16. very helpful info. couldn't figure out why the courts were denying what the parents wanted.

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  17. So this case us complicated and I followed it for several months. Charlie has a condition that has neither a treatment or a cure. I also think based on some recent comments made on the Terri Schavio FB page that the mothers real goal is NOT the experimental treatment but to get Charlie somewhere so the he can have a trach and gtube inserted and be on a home vent. GOSH won't do that. The mother stated that "she knows life expectation is 4 years with the trach and vent" so the reality has come out.

    These parents appear to now be about "getting the way" rather than what is best for their son. Also withdrawing the vent does not mean stopping food and comfort.

    Now about the "going home to die" part. Charlie is intubated and in a lot of medications to control seuzures and he will probably die within 5 mins of the ETT being removed. The parents I am sure have been told and know that the request to take him home us unrealistic and I think was done to try and manipulate the situtation.

    This is also less about socialized medicine as it is cultural difference between the USA, UK and other Countries.

    Charlie Gard is a First world ethical and moral "outrage" issue. The majority of people in this world are more worried about their next meal and not at all about the semantics of how long medical science can forces dying body to use oxygen and nutrients

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  18. What a sad situation. Death of a child is a terrible thing to go through. I know. Been down that miserable road myself.

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    1. Wow, I've seen some accidental reposts, but thirteen? New spam record.

      What does this have to do with the subject of Charlie Gard? Yes, it's horrible to lose a child to an unexpected genetic defect. But he's beyond help; the brain damage caused by the cell loss means he's only slightly better off than Jahi (Not braindead, just mostly dead). As most have already said, I feel for the parents.

      But what the hell does that have to do with the American political system??

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    2. It has nothing to do with it, other than the fact that Trump seems to be anti-vaccine, just like Anon.

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    3. Anon seems to be more anti reasonable discourse than anything else. I wonder how his bowlmaking is going.

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  20. well, back to automoderation for another month, I guess.

    fuckwits...

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    1. You tired yet of doing the stupid posts?

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    2. cornboy never gets tired of being stupid.

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    3. Doc B been deleting anonymous posts .

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    4. by the dozen. I'm surprised he hasn't turned on the automod system.

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  22. Just now in the LA Times:

    "The mother of a terminally ill baby in London said Friday that recent international support has revived her hopes for her son's life, and that he is not suffering.

    Connie Yates told “Good Morning Britain” that recent intervention attempts from Pope Francis and President Trump have played a role in extending her son Charlie Gard's time on life support."

    http://www.latimes.com/world/la-fg-charlie-gard-20170707-story.html

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    1. shades of Jahi McMath. isn't LAtimes the one who was rpeeating everything mamanails said, too?

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  23. Was reading online about Charlie. I think they are going to try the experimental medicine on him.

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    1. There is a picture of him online which I think is current. Such a beautiful child, brings tears to my eyes.

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    2. this is the most recent, taken on the 8th of july https://scontent.fbhx2-1.fna.fbcdn.net/v/t1.0-9/19894673_10214126162447129_8470325592363660943_n.jpg?oh=22d77420a9edbf5a14bef496e2a7b9eb&oe=59FBAEFF

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  24. Looks GOSH is now applying to the High Court for a review of their decision on the basis of new and positive data regarding the experimental treatment.
    https://www.theguardian.com/uk-news/2017/jul/07/charlie-gard-hospital-applies-to-high-court-for-fresh-hearing

    I would be very interested in a professional perspective on this. Isn't the brain damage Charlie has already sustained still irreversible? Is the hospital trying to safeguard its position and reputation? (I'm saying this with all respect for their actions, which I think have been taken with Charlie's best interest at heart.)

    Thank you for your very clear and compassionate perspective. I have just discovered this blog and been reading up all afternoon.

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    1. The parents are claiming new evidence, so the court has a duty ti hear it, the hearing opened yesterday and the evidence wasn't entered into court (this has been happening all along, the parents' solicitor has been withholding evidence from the court appointed guardian and the hospital) The soilictor tried to make a case for a new judge (which would mean the whole case being heard again) but there's no basis in law for it, the solicitor also wanted to adjourn until after Charlie's first birthday in 2 weeks, but the judge has told them that the evidence has to be in court by Thursday because prolonging things is not in Charlie's best interest. The letter into court basically reiterates the earlier statements by the doctor in the US, so isn't new evidence in itself, but they're claiming unpublished research which is still about TC2, not the disorder Charlie has

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    2. an it sounds like the claimed "new" evidence is the same evidence, repackaged. if so, then this should be publicly outed as a stalling tactic.

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    3. I agree Ken. It is all about delay.
      If they lose this case, which i expect they almost certainly will, i fully expect them then to try and appeal it and then appeal to the supreme court and then trying the ECHR again.
      Every delay means they get more time with Charlie and Charlie gets more time with pain and suffering.
      This is why they asked to be given a bit of extra time to allow family and friends to say goodbye.
      The extra time was being used to try and get some doctor or another to offer treatment or aanother hospital to offer to take him, anything that they could cling to to delay relieving Charlie from his hell on earth.

      I suspect that there are machinations going on that will attempt to try and get Charlie 'home to die' and once out of GOSH they will whisk him off somewhere where he can be kept on a vent and gtube until he dies 'naturally' in that he heart gives up or he gets an infection.
      There are plenty of supporters out there who would be willing to help his parents move Charlie where there is either no extradition treaty or there is one but the Courts would have to go through all the legal processes that involves. In the meantime, GOSH is hated on, threatened, demeaned, slandered and its staff called everything under the son for putting Charlie's well being first.
      His parents have become very media saavy and whilst not coming right out with definite statements about the percentages (rapid backtracking when called out on it) there is a lot of minimization, omission and the odd absolute whopper "he could be a pefectly normal little boy".
      We see older photos where he looked a lot healthier and alert, videos of him on the roof garden of the hospital, again when he was a lot healthier, the edited in a very strange way of her stroking his face where there appears to be zero reaction, response or acknowledge it was happening by Charlie before cutting away to said rooftop scene.

      When the time comes for the hospital to say enough it is time to turn his support off and let him die peacefully and painlessly, expect ructions from the family's supporters, the parents to vent and possibly even threats to sue someone, anyone.
      Mom will have an epic meltdown.
      my concern for her is that she is so caught up in this fight to save Charlie, it has become her sole purpose in life, that she could self harm when she realizes Charlie is going/has gone.
      I hope they have a good support system and that both of them get counselling.

      I also hope that should they decide to have further children that they have screening so they don't another child with the same syndrome as Charlie.

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  25. Thank God they have no MICRA in the UK.

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  26. Read the court documents linked by another poster here.
    What does "parents are spanner in the works" mean??
    And wow that hospital took a nice jab at the American medical community in their paperwork with, "in the United States, provided there is funding, they will try anything"..
    That was a nice dickheaded comment to throw in there, all that doctor was trying to do is see if the medication could possibly help the child and if the case arises in the future see if administered soon enough help save a life.. But it seems this hospital gave up and drug its feet long enough that even if the medication could help, it's too late in this kids case.. Wtg hospital, you proved your point- that you're in control. Yeah I'm saying this over simplistic, I understand there is more in to it, but the dig deserved another..
    Yeah we do anything for money, oh wait, that's why my neurosurgeon refuses to do surgery for fear it will hurt more than help..

    ReplyDelete
    Replies
    1. Googled spanner, means- a person who is stupid, a muppet or a retard..
      A set of parents upset their child is dying, no longer going to be with them, they are helpless and some parents have a natural reaction to make their kids feel better with a kiss or a band-aid and these parents have nothing..
      But they are the retards, stupid and Muppets..
      Jesus Christ that doc or what it is soap box must be huge, I wonder if they ordered it from the United States since you can buy anything here..

      Delete
    2. spanner = monkey wrench.

      Delete
    3. Ken I had seen that, I had to go look up the slang meaning..
      Like here the girls use to call other ratchets, ratchets in slang means whore or slut.. I see salty thrown around, back in my day salty was used as slang for a white person. My grandfather (Navy) called his friends salty dogs.. Salty apparently means bitter now..
      And the most callous one I have heard lately- autistic potato.. My co-worker calls his dispatcher that instead of retard.

      Delete
    4. Spanner in the works still means the same as monkey wrench in the works, though.
      means the parents are causing things to be more complicated than they should be. I saw either here or another forum that the hospital had actually applied for permission to run an experimental use of the experimental drug there, but Charlie's condition deteriorated too fast. there is now a question of whether they can even move him and have him survive.

      Delete
    5. Thank you Ken. That's exactly what "spanner in the works" means here in the UK.
      Cali, when you googled "spanner" you should have specified British English as the language - I've never heard of that word being used as an insult. Here, a spanner is something you find in a mechanic's toolbox.

      Delete
  27. It's totally different but I just read an article that reads at the end the mother stating "we are not allowed to let him live and we are not allowed to let him die or have a choice of where he dies" while I feel for them, many, many parents never got that choice either, right here in the USA. The choice was never given to us. Life support was never an option. Having a chance to say goodbye was never an option. In my case I sat in the back of an ambulance, holding my cold, nearly stiff daughter crying and saying my goodbyes, while changing her diaper and covering her with a sheet. Many times parents aren't given any options and we have to be ok with that. It's the cards we were dealt. Prayers for all the strength in the world for not only Charlie but his parents and extended family.

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  28. Something went catastrophically wrong, for reasons that we do not fully understand, and this baby isn't going to make it. The only things are to make him as comfortable as possible, and to give thanks that this defect is vanishingly rare.

    ReplyDelete
    Replies
    1. The only thing that went wrong though is the fact that he has an incurable condition with a 100% death rate.
      Connor

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  29. This whole thing is just awful overall. I like to think of myself as a rational, realistic person, but this is a test of that.

    I haven't done much research at all here (that's what you're for, right Doc?) But what I can see so far here is that unlike Jahi, he's still alive. Is the treatment at best experimental and realistically futile? Yes. But at the same time I also think that the parents should be able to fight for his life since he isn't truly gone yet. But then again they shouldn't put him through agonizing pain for a realistically futile "hail Mary."

    It's difficult because doctors and most humanity want to fight for life, especially the life of an innocent child. But at what point does it cause more harm than good, even if the intentions are pure? And would the treatment give additional research to combat future cases? Or would that be inhumane in his case because of the pain it could cause?

    The rational, realistic side of me says let him go as peacefully as possible because it's over. But that damn (sometimes annoying) sliver of humanity I have wants to hope something good can come of it. I still don't know.

    ReplyDelete
  30. an update from a contact in the UK has it that the experimental pill is on its way to the hospital where Charlie is. I personally hold no expectation that this will be any benefit to Charlie, but it will possibly benefit the next child to be born with this condition. - but at the same time, I also hold the expectation that when it proves to be futile, we will have another public court battle.

    ReplyDelete
    Replies
    1. There is some very small chance that some little bit of useful data might come out of trying to treat Charlie with this drug, but such trials very rarely yield anything of value for either the researchers or the patient.
      Orac, over at Respectful Insolence, has written extensively on the perils of "right to try" legislation that is being proposed or has passed in many US states. Desperate patients and their families tend to be in favor, researchers are often against. It really is very messy when examined critically.

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    2. the researcher should have complete control over whether it is offered.

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    3. it isn't on it's way, it's not a pill, the hospital can do nothing while the case is back in court,and would not unless there was compelling evidence that there would be benefit. The researcher cannot use a child as a lab rat, this would not be research, it would be experimentation

      Delete
  31. The family should sue the hospital for depriving them of their due process.

    ReplyDelete
    Replies
    1. They had due process in both British and European courts.

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    2. Why do you think they were deprived of due process? Are you unaware of the multiple court hearings and opinions? The hospital has done nothing wrong in this case.

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    3. That would be up to the court to decide.

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    4. If the US could give Charlie Gard and his family permanent residency, the hospital as well as the Supreme Court of the United Kingdom, can no longer dictate on what they want done to him.

      Delete
    5. the court decided 3 months ago. somebody; which is probably an American with his eyes on the million pounds, has made arrangements to try the miracle pill, which the doctor who is developing it already says will not cure Charlie, in the UK; which great Ormond is open to, and, in fact, applied to do when the pill was first mentioned.

      but of course, you won't hear about this in the media, because the media only prints what Charlie's parents say.

      Delete
    6. Just out, the court will hear new evidence, as requested by Great Ormond:

      http://www.msn.com/en-us/news/world/uk-court-rehears-charlie-gard-case-in-light-of-new-evidence/ar-BBE7JlO?OCID=ansmsnnews11

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    7. just out: the alleged new evidence is the same old evidence, repackaged to make it look new.

      http://www.bbc.com/news/uk-england-london-40552026

      sound familiar?

      Delete
    8. The letter from the 7 doctors is widely available online, and it is a reiteration of the April 'evidence' about a different MDD

      Delete
  32. I am remembering a story told me by my own doctor years ago. This guy was a good deal older than I was and is gone now.

    When he was a resident, way back when, he found himself assigned to caring for a guy with some heart problem who had been hooked up to a machine intended to shock his heart back into function. A very early and very primitive version of therapy which is in wide use now.

    Every interval the machine would kick in, and this guy's entire body would shock up out of the bed. It looked painful and probably was.

    He died of course. But as a result of what was learned through this patient and innumerable others, many many lives have been saved. Which might possibly have pleased this doomed patient.

    ReplyDelete
  33. You can shock them into asystole too without a cardiac monitor. But with today's AICD they are programmed to detect VT and VF.

    ReplyDelete
  34. Via Salon:
    https://www.aol.com/article/news/2017/07/09/lawmakers-call-for-us-residency-for-terminally-ill-baby-charlie/23022783/

    ReplyDelete
    Replies
    1. I was spot on.

      Delete
    2. more "look how much we care about children" posturing. dollars to doughnuts it doesn't actually go anywhere.

      Delete
    3. The Magna Carta is the most important legal documents in the development of modern democracy, the Magna Carta was a crucial turning point in the struggle to establish freedom. Thanks.

      Delete
    4. Ken: Posturing indeed! If it were some poor Mexican kid who happened to be in the US while his parents were laboring at harvesting vegetables or fruit, the same people would likely be advocating sending him back to Mexico through a one-way hole in the wall.

      I'm curious about the potential for the UK courts to block removal of Charlie from the country.


      (link-poster Anon)

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    5. Preventing their freedom of movement is fascism. Especially if they've been granted US Permanent Residency. The UK court no longer has jurisdiction once they get their green cards.

      Delete
    6. IF they get green cards, which I sincerely doubt will happen.

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    7. even with US residency, he would be a UK citizen, in a UK hospital, under the guardianship of the UK courts -green cards aren't magic

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    8. If any of the proposed treatments work to make Charlie's muscles less non-functional there may be a horrible unintended consequence. Refractory seizures are typical of the syndrome, and I've seen reports that Charlie is having seizures. Presumably with his general lack of muscle function the seizures are manifest "only" as electrical activity visible on EEG. If muscle function is restored, I wonder about the possibility of tonic or clonic seizures which I'm sure the parents would find extremely distressing. Such seizures would also complicate Charlie's care, possibly requiring restraints to prevent problems with connections to the ventilator and instruments.

      Of course this is entirely speculative on my part, since I don't know what the treatment(s) is/are expected to do.

      Doc B - comments S.V.P.

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    9. Doug - I'm in the same boat as you and everyone else. This is such a rare disease that has never been successfully treated in any way, so no one knows what could potentially happen.

      Delete
    10. Salon headline basically sums it up:

      Republicans cynically offer Charlie Gard citizenship to get the health care they won't give to others

      So lawmakers are inviting this family to come to America and become citizens so they too can go bankrupt and become homeless once their 1.7mil is gone. With the cost of health care in America it won't take long.

      Delete
  35. Most of the media are showing older pictures of Charlie when he looked healthier, looked alert and present mentally or when the ravages of the treatment to keep him alive were not as obvious or, the photo was carefully staged and angled.
    Whether this was a deliberate act of the parents (i believe so) to get the public on side implying he was healthier than he actually was in order to bolster their claims that he was not suffering or in pain, that he responded to his parents etc.
    Currently she is quoted as saying he had a 10% chance of the treatment working although in the actual court transcripts she claims she did not say that, when the judge told her to provide evidence of the claim of success.

    The photos below show Charlie as he currently is, not the cute bright eyed little boy portayed by the media but a bloated body kept artificially alive. The doctors have now put him on morphine as they believe he is feeling pain, especially given all the suction etc required. Since all his major organs are failing it could also be down to fluid retention.
    She quotes an american girl who had a similar disease to Charlie and who was on a ventilator and now rides a bike as an example of what it could help Charlie be able to do.
    What isn't said is what else was wrong with the girl, was there brain damage and if present , how severe?
    What else did she have going on and is she still reliant on a ventilator?
    What stage she was treated in comparison the the current stage of Charlie?
    The judge has rightly said the evidence needs to be new and shown to be of benefit to Charlie.
    From what has come out, it seems the evidence they are presenting is either of treatment on similar cases and not as profoundly damaged as Charlie or, theoretical treatment which might work if it goes through the blood brain barrier but again would have a minimal chance of improving Charlie's life ( how that would work i don;t know since his brain damage is profound and irreversible) i suspect it might just delay the inevitable.

    I also wonder, if their request is denied, will they then go through all the appeals process again as they did before?

    Are these just delaying tactics?
    Did they know perhaps that this request would be denied but they asked for extra time to allow family and friends to say goodbye and used the extra time to get doctors etc to claim they might have a treatment?
    I would not put it past them.

    Forgotten in all this is the suffering of a little boy as he is offered up as a sacrificial guinea pig or simply forced to exist on whilst he parents are in denial and delaying the inevitable.

    Sad to say i wish he would simply die in his sleep, his heart just giving up. A peaceful painless death is the kindest gift we can offer Charlie

    http://i3.mirror.co.uk/incoming/article10752271.ece/ALTERNATES/s615/PAY-Charlie-Gard.jpg

    http://www.telegraph.co.uk/content/dam/news/2017/07/10/TELEMMGLPICT000134305653-large_trans_NvBQzQNjv4BqbRF8GMdXQ5UNQkWBrq_MOA1vLvhkMtVb21dMmpQBfEs.jpeg

    ReplyDelete
    Replies
    1. "a disease similar to charlie."

      note: NOT the SAME disease as charlie, because every other infant diagnosed with the SAME disease as charlie died.

      Delete
    2. Exactly Ken, and many readers of the tabloids don't understand the difference, heck some of the MSM don't understand the difference either.
      Similar means the same in relation the mitochondrial diseases, allowing only that some might be slightly sicker than another, the same with many diseases.

      Treatment means to make better, to be made well again.
      Incurable means it can't be cured but with treatment the patient can be made better which implies running around being a normal healthy child in this case who might have some developmental problems.

      I despair at the thinking of some people at times, not hearing nor listening to what is actually being said, instead they hear and listen to what they think is being said, which is how politicians and criminals work and get away with murder, literally in some cases.

      Delete
  36. I wonder if allowing the parents to take Charlie home to die would really be a kindness (to the parents, that is).

    If Charlie had lived a normal life at home for some substantial time, perhaps. But under the circumstances, I can see the room in which he will die as becoming permanently "the room where Charlie died" and perhaps even the house becoming "the house where Charlie died", and thus a constant painful reminder, escaped only by moving to a new house. If they remain in the house and both parents don't regard it, one way or the other, in very similar terms, then I think it may have the potential to become a wedge between the parents. If their objective is to keep him alive as long as possible, what happens if one of them makes a mistake that ends Charlie's life?

    Would the parents have greater comfort from their moment of supreme grief in private or with the doctors and nurses who have cared for Charlie there for support and to share their grief?

    This sort of situation cannot be unique. There must be psychologists and others with insight.

    ReplyDelete
    Replies
    1. good chaplains specialize in this sort of thing. - even for those who do not have religious beliefs, good chaplains are also trained in bereavement counseling.

      Delete
    2. He's 10 months old. He's lived in the hospital every bit of that but 8 weeks. At this point he cannot see, so the hospital IS his 'home' in every sense of the word. It's his usual. The sounds, smells, touches, nurses, Mom and Dad etc. in my opinion taking him home to a place totally out of his normal would cause undue stress on him. let him die at the hospital in his parents arms, in his hospital room surrounded by the people that love him the most. That would be the best thing for this little guy. But no adult involved seems to be thinking about Charlie, except for GOSH.

      Delete
    3. N y a h - I (originator of thread) agree entirely with regard to GOSH being home for Charlie. At the same time, I allow that there MAY be some comfort to the parents in having Charlie in their normal residence, but I would argue that Charlie's comfort, insofar as it exists, should take precedence. And as I have suggested, I have serious doubts about both the short and long term effects on the parents if they do take Charlie to their home.

      I strongly suspect that any new treatment that is to be attempted will require that Charlie stay in hospital under very close scrutiny. It sounds as if the treatment being contemplated will have, at best, pretty subtle effects. If the parents have notions of experimental treatment of Charlie becoming his legacy to other children, then the experiment must be conducted with as much rigor as possible, meaning it must be done in the hospital. I wonder if they have considered this.

      Delete
  37. Charlie's parents are in contact with another family that has a boy on that trial medicine. He has the TK2 mutation, not what Charlie has. His name is Arturo Estopinan. It seems to be helping him but it is not a cure. It has never been tested on Charlie's disease.
    One thing I noticed on recent pictures of Charlie is that at 10 months old he is quite large, wonder what would cause this?

    ReplyDelete
    Replies
    1. He was healthy so something triggered his underlying condition.

      Delete
    2. He wasn't healthy, he was born with a gene mutation.

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    3. @Anonymous 11 July 2017 at 07:59— he was never healthy. He was born with a fatal genetic mutation.

      Delete
    4. This comment has been removed by a blog administrator.

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    5. Anon - That is quite enough. Read this and understand very clearly: Charlie was born with a genetic disease. It is autosomal recessive, extremely rare, and universally fatal.

      I will not tolerate this form of bullshit from you or anyone else. Take your fuckwittery back to your antivax forum where your like-minded cronies can pat you on your back and congratulate you for your brilliance. In the real world, it's just bullshit.

      Fuck off.

      Delete
    6. Anonymous - foreign medical training? WTF? And who are you calling an idiot? Inquiring minds want to know.

      Delete
    7. Anon get the fuck out of here. You have ourstayed your welcome.
      Connor

      Delete
  38. Ok here goes my two cents. I am a PICU nurse, very conservative and pro-life to the core. I don't like how some hijack this case as an example of socialized medicine or that the hospital is trying to kill a baby.. I don't believe that is the case. There are no winners here and it has to be about Charlie's best interests. I feel terrible for the parents. There is nothing worse than losing a child. All of your hopes and dreams never to be realized for your flesh and blood. Many parents can't accept that and are in denial. His parents feel loss of control, anger,so many things. The logistics of even moving him home or somewhere else are near impossible. There comes a point where continuing to treat a patient like this is cruel and inhumane. I have seen so many children who have very little brain function left from either trauma, accidental and non accidental or genetic diseases where the parents can't let go. They insist on a tracheostomy and g tube swearing they are going to take them home. It rarely ever happens and they go to a nursing home to vegetate. These children end up with multiple PICU admissions for pneumonias, viruses, septic, seizures...the list goes on. It's painful to them and sad to watch. The most loving thing would have been to let go and let nature take its course. That is not euthanasia. There comes a point when medicine can do no more. I truly feel sorry for Charlie's parents

    ReplyDelete
    Replies
    1. thank you for being bold enough to stand up against the fringe of your political spectrum's extremism.

      Delete
    2. Thank you Anonymous.
      Sometimes the kindest thing to do can be the hardest thing to do.

      Delete
  39. Nora (not her real name) has emailed me with these comments:

    "I do emphasize with parents from the child's perspective; as an infant, I too failed to meet developmental milestones and my parents fought vehemently up to examination by Head of Pediatrics at Egleston Childrens Hospital in Atlanta, Georgia. I was born without a thyroid gland; miracle upon miracle my brain did not experience any damage, physical or intellect. I was the first infant to successfully survive and develop normally with Synthroid taken daily. Having said that, I am not comparing my medical past condition, only the parental focus to try everything.

    Secondly, there are no answers nor should there be judgements against parents; only prayers for them and sympathy towards their unfortunate positions to face.

    Lastly, not sympathy is not the same as empathy so negativity has no purpose in these conversations."

    ReplyDelete
    Replies
    1. problem is there is nothing that could compare to the synthroid that allowed you to have a life. we are certainly sympathetic to their loss - as soon as they admit to themselves that they are suffering a loss.

      Delete
  40. I have been at work since Saturday, wth did I miss.. Friday they were going to give the parents a little more time to say goodbye, and then remove life support, and I haven't heard anything else.. I thought they exhausted all their appeals and there was nothing else left but vent removal???

    ReplyDelete
    Replies
    1. to sum up:
      it was announced that there had been a change and the Great Ormond Street Hospital was going to try the American experimental drug.
      then it was announced the whole thing was going back to court.
      then it was announced that it was going to court because of new information.
      then it was released that the "new" information was essentially the old information slightly reorganized and put into a new folder.

      In America, this would then become a lather-rinse-repeat scenario, with the parents living off of tax money while they play an endless game of kick the can with the court system, punctuated with people releasing clips from their social media postings showing them living it up when they are not busy claiming to be suffering horribly. but perhaps the UK courts will not be as wishy-washy as the US courts.

      (the next court date for Jahi McMath is coming up - the briefs have already been released, and the plaintiffs' brief is pretty much the same as the last five times. "she's alive because we have home video of her moving after we said something but we won't let you examine the video or the patient"

      Delete
    2. There is no probable way that they can give different evidence, that medication had never been tested in lab mice on that specific MDDA. I don't imagine there is any specific information that can be given to show it will or won't work.. The evidence can't give percentages, it can give maybe, could of, should of, and probabilities..
      I'm torn on this case, it's just not that simple..
      I'm pro-choice.. But, I'm all for trying the medication- several months ago.. The pros and cons are just so numerous, he isn't brain dead but he has severe brain damage.. I have read the arguments on both sides, and have read the court proceedings.
      We aren't getting the full story, the docs can't discuss it and the parents are going to tell their story how they see fit..
      In the court documents the doc said the medication had broken the blood brain barrier but not in a degree that Charlie needs. It's only a matter of time before that babe passes away on his on, as sad as that is, what he has is fatal and I doubt any amount of life support will keep him alive like jahis is doing.
      So it was the hospital that called for the court hearing, I'm confused, they were given the okay to remove life support but said they would give them more time, from what I read they had til this Friday for extra time.. I am curious what the court will decide..

      Delete
    3. kind of makes one appreciate the simple straightforwardness of a wreck, doesn't it?

      Delete
    4. R's to that!! First migraine if the year, asked for someone to tow me home, jumped in the truck and got a police call. Tonight RO was drunk, had dead tags since May, no license, and no insurance.. They towed it for private non pref for blocking a street.. That shit isn't straight forward either..

      Delete
    5. R'amen** gotdamn autocorrected to R's..

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    6. but comparatively speaking...

      and the neighbors got a hagfish spill today.

      Delete
  41. I wonder what would happen if Charlie suffers brain death?
    Will his parents accept he is dead and begin the grieving process or will they fight that as well claiming he isn't dead just profoundly brain damaged.
    Given what has been going on inside Charlie's brain, is there going to be that much difference between brain alive Charlie and Brain dead Charlie?
    The poor little child.
    I also hope the staff working with Charlie are getting all the help and support they need, they have been almost proxy parents to Charlie, feeding, caring, changing him.

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    Replies
    1. The only difference between brain dead Charlie and brain damaged Charlie is PAIN. If he suffers brain death at LEAST he will no longer feel pain. And that, is a blessing in itself.

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    2. ...exactly what I was thinking.

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  42. Just read in the news this morning mom yelled at judge, dad banged on the table and they stormed out. It's time to stop fighting in the court of public opinion and just BE WITH THE BOY. Cuddle him and give him all the warmth and love he needs as he leaves this earthly realm. But it seems they'd rather let members of the hospital staff do this. I can only imagine how much pain and grief they are feeling. They are the guardian angels of this poor little boy.

    ReplyDelete
  43. from Associated Press, at the CBC:
    http://www.cbc.ca/news/world/charlie-gard-court-1.4202618

    "The doctor, whose name and institution cannot be named because of a court order, told Britain's High Court that new clinical data has emerged about the effectiveness of the treatment proposed for 11-month-old Charlie Gard, who suffers from a rare genetic condition and is on life support.

    Judge Nicholas Francis said the doctor should come to London to see Charlie and meet other experts. At the end of an eight-hour court hearing Thursday, Francis said "no hearing can resume" until that happens."
    ...
    " "We have a much better understanding of the data," the doctor testified, saying the information has emerged in the time since judges first rejected the parents' bid to take him to America."

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  44. I have a question about what kind of ventilator support Charlie is on right now and what kind of ventilator support the parents are asking for going forward. I'm a parent of a child on a permanent trach-vent (for a totally different reason, with totally different medical issues having nothing nothing to do with mitochondrial disease) which I am bringing up only to explain that I understand more about ventilators than the media or the parents in this case seem to.

    Every picture I've seen of Charlie has been with him intubated, so am I correct to assume that he doesn't a tracheostomy. In an American hospital, if a baby is going to be on long term ventilator support, they do a tracheostomy surgery, because long term intubation sucks for a variety of reasons.

    Did they try face mask ventilation and that either didn't work or stopped working because the baby's breathing problems were too severe? Is the family asking for the doctors to perform a tracheostomy surgery in order to facilitate transport or continued home ventilation? So the family isn't just asking for continued intubation, they're actually asking for the doctors to perform a tracheostomy surgery in order to facilities continued ventilator support. It seems like demanding for a surgery to be performed (a tracheostomy) that goes against he judgement of the physician in order to facilitate continued life support is a different issue than just asking for continued life support (via endotracheal intubation).

    And can somebody remind me how Jahi McMath ended up with a tracheostomy? The hospital saying "no" to the trach surgery is the place where a line in the sand gets drawn, or not, right?

    Babies don't get sent home on endotracheal intubation in the UK, right? That can't possibly be a thing. So in order for the family to take him home, they would be asking for a tracheostomy surgery, in order to have the baby on a home trach-vent. But is he in any condition to survive a trach surgery and the recovery process? And are his ventilator settings stable and reasonable to be transferred over to a home ventilator via tracheostomy, or are his ventilator settings crazy and unstable and not suitable for hospital ventilation? Lots of babies still stay in the hospital following their tracheostomy surgeries, because their ventilator settings are too high or too unstable for home care, or too high or too unstable to be switched over to a home ventilator. There are all kinds of well established policies on what kind of teach-vent patient is stable enough to be at home, and what kind of teach-vent patient has to stay in the hospital. Even if Charlie got a trach-vent, would he then be stable enough to go home? It's unclear. The family is referencing the fact that lots of babies are sent home from the hospital on ventilators, but the actual nitty-gritty of their ventilator needs and settings is super important.

    ReplyDelete
    Replies
    1. Auto-correct kept changing trach-vent to teach-vent, my apologies.

      Delete
    2. McMath had her trach surgery in New Jersey after she was transferred to St. Peter's. CHO and Jahi's mother had worked out an agreement to release her into her mother's custody. This means Jahi had to make her cross country trip still intubated.

      Delete
    3. my understanding of Charlie's condition is that his muscles are physically incapable of breathing, which is why he needs the respirator.

      Delete
  45. Respectfully: you're wrong. The issue is parental rights. Now clearly, society (in the form of the government, the medical community, the courts, or whatever) has some right to usurp the parental right to care for their own children when there is blatantly bad, and destructive, parenting going on. However, in the case of both Jahi McMath and Charlie Gard, the medical community admits it cannot help the children recover. It then has NO RIGHT to stand in the way of the parents seeking alternative options on behalf of their own flesh and blood. The arrogance is astounding. Miracles happen. Where there is life, there is hope. As a parent, I may well choose not to seek out extraordinary, and probably futile, treatments for my child. But as the parent, it is my God-given responsibility to make that determination! It is the Mama Lion in me that growls when I see stuff like this happen. Just because doctors study medicine does not make them superhuman. Believe me, I greatly admire and appreciate doctors! They save lives, and they make life better, when no one else can, because of the studies and practice and sacrifices they have undertaken. But when they have nothing left to offer the parents, they should get out of the way.

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    Replies
    1. sounds good, looks goon on paper, but the problem is the doctors WANT to get out of the way and let the inevitable happen, while the parents want the doctors to waste their time and effort defying the fact that Jahi's brain is dead, and Charlie's muscles are rapidly dying.
      Jahi is mostly dead, Charlie is dying. if the doctors get out of the way, both will become all the way dead in short order.

      Delete
    2. Mama Lion - What you're saying sure sounds good, but what you're suggesting is not what Charlie's parents are asking for. They aren't asking the doctors to get out of the way, they're demanding that they give Charlie a ridiculously expensive treatment that has never been used for his condition, which you must remember is universally fatal in infancy. I would have no problem with the hospital and doctors stepping aside and letting Charlie go "home" with his parents, even with the ventilator, to give them time alone with whatever time Charlie has left. But that is *not* what they are asking for.

      Delete
    3. Doc--Well, that IS one part of what they have asked for: to be allowed to bring Charlie home. The other thing they HOPE for, is the chance to find an alternate medical team willing to try an experimental treatment to keep their son alive. A treatment which they have been told by actual experts in the field has (possibly)a 10% chance of providing real benefit, and one for which they have already raised funds,from sympathetic donors. As far as I can see, the original doctors are stubbornly standing "in the way", because they have decided they are the benevolent bosses, here, and know what's best. They may, in fact, know what is best--I don't deny that is plausible. They are just not tasked with raising Charlie-they were not given that child to be their own! The parents of Charlie have the right to decide, because Charlie is THEIR child. How would you feel if your child was denied treatment you felt might save his life, by people who decided they knew the facts better than you? How would you feel if they negated your parental instincts and rights as you child lay dying? Still growling...

      Delete
    4. possibly maybe a 10% chance of making a difference, except it has a 0% change of repairing the damage which has already been done.

      the best they can hope for is that Charlie will recover enough that they will be able to tell how much all the poking and prodding necessary to keep him alive hurts him.

      Delete
  46. Mmm. [head cocked sideways - like a dog] while I agree with your statement Mama Lion, until you mention Jahi McMath. She's brain dead and that's torture of human remains and a severe inability to accept that Jahi really IS gone. And in Charlie's case, yes as a Mom myself I'd want to not leave a stone unturned, but at the same time think about the quality of life my sons had and will have. Not just that his physical body is with me. That's not life. That's not a life any child wants to lead. But his capability to run and play and play kick ball and feed himself and be normal. That's what I don't think either of these parents are taking into consideration. And no matter how much mama bear I have in me, QOL takes precedence over just having a human sack of potatos to call my child. But that's just me.

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  47. These are examples of very bad parenting. Neither Jahi nor Charlie have any hope of recovery. Jahi is an animated corpse and Charlie is fatally ill. Both of them require medical technology to maintain their present conditions. All people, including children, have a right to a pain-free life and a peaceful death. This right trumps the right of the parents to have their psychological needs met through their children. Even the Catholic Church has a hard time finding miracles these days.

    ReplyDelete
    Replies
    1. "All people have a right to a pain-free life and a peaceful death..." Really?? Pain is a part of everyone's every day struggle to live. Did you never have a bruised shin or a broken heart? When I had my c-section, I required medical technology to live, as did my son, when his hand was reconstructed. We have a right to life. Not to a pain-free life and a peaceful death. No, those "rights" don't trump the rights of parents to fight with every ounce of their being for their children's lives, if that is what they feel called to do.

      Delete
    2. he did not say charlie needed medical technology to live. he said charlie needed medical technology to maintain his current condition.

      there is a very big important difference. Charlie has a condition that has a 100% chance of being fatal. there is an experimental treatment that makes charlie's condition have a 90% chance of being fatal, and a 10% chance of of being painfully protracted before being fatal. Charlie has had all the life God allotted him, whether you like it or not and whether his parents like it or not.

      what Unknown was saying about a right to a pain free life, is, everybody has a right not to be tortured.

      Delete
  48. and the latest silliness:

    An amendment to grant the family residency was passed unanimously in the House Committee on Appropriations on Tuesday, according to Congresswoman Jaime Herrera Beutler, who introduced the amendment. But it would need a vote from the full House and the Senate to become law.

    it appears the clause is a rider in a bill that gives Trump money to build hes border wall and increase restrictions on immigration.

    "we will restrict immigration, except this kid and the million pounds that have been donated to his parents"

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  49. It is not the hospital deciding what should be done with Charlie, it is the court. It is my understanding that the hospital actually asked the court to review the matter again in light of the claims made by presumably trustworthy physicians from abroad that there may be treatment(s) that will be beneficial to Charlie. I say "presumably" because there are plenty of quacks offering false hope out there.

    In many countries courts routinely intercede in the affairs of children. Children are removed from parental homes and placed in foster care. Courts may order medical care for children against the wishes of the parents (e.g. ordering blood transfusions for Jehovah's Witness kids), or may order end of care in a hospital so that parents can seek "alternative" therapy (e.g. for kids with cancer, where the outcome is almost invariably bad because the alternative therapy is quackery). In such countries, society has decided that parents are not always right and children are not the property of parents and deserve consideration that is regarded as being in the best interest of the children.

    I attended the trial of a woman whose 7 year old son died because she did not seek proper medical care for him. She testified that mothers know best. They don't. It is almost certain he could have been saved with ordinary penicillin. She has been convicted of criminal negligence causing death and awaits sentencing.
    I attended the appeal hearing of parents whose 2 year old son died because they used quack "remedies" instead of real medicine. They were convicted of failure to provide the necessaries of life. (I think there is some chance a new trial will be ordered on the basis of a point of law and failure of the original trial judge to properly charge the jury regarding that point.)
    Not too far from where I live a boy died at the age of 15 and a weight of 37 pounds(!) because his parents thought they knew better than medical professionals and failed to properly treat his diabetes. The parents were convicted of first degree murder and are in prison.
    Had courts been able to intervene in these case to override parental decision, these kids will all be alive.

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    Replies
    1. the hospital agrees to review the case, then found out the "new" information was just the same old information, repackaged.

      Delete
  50. http://www.dailywire.com/news/18750/congress-gives-baby-charlie-gard-legal-resident-ben-shapiro
    And now the circus has began. New Jersey... here they come. Ugh.

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    Replies
    1. The comments in that dailywire article are quite appalling, in my opinion. Most amount to "my child is my PROPERTY, I can do with it as I please and no pinko government is going to interfere". There is little evidence of concern for Charlie, only for his parents. Most seem to think that the doctors and the judge are just trying to dispose of Charlie as quickly as possible and are coldly indifferent to his welfare. They rail against socialized medicine.

      On the latter: I rarely feel particularly patriotic. At the trial of the mom of the 7 year old who died from lack of medical care, one of the doctors from Alberta Children's Hospital was asked by the prosecutor if the boy would have been treated, even though he did not have an Alberta Health Care card (normally expected, primarily as a means of identification & confirmation of his right to health care from the public purse). I don't recall the exact words, but they were close to "Yes. It happens all the time. That's the way we do things in this country." THAT made me feel patriotic.

      Delete
    2. read my citation above - what was passed was an appropriations bill that will pay for the wall that mexico was supposed to pay for, fund stricter controls on immigration, and make Charlie a resident immigrant. - but it still has to get passed by congress and the senate, which is likely to take a while.

      Delete
    3. I find the whole idea of attaching totally unrelated riders to bills very bizarre. In this case, it seems to me likely that the Charlie clause is doomed because it is attached to the wall bill. Nuts though it may be, I suspect the [perhaps was once but is no longer}G OP members of congress & the senate won't pass the appropriation for the wall.

      I'd like to hear from a UK equivalent of Ken from Popehat as to whether a grant of US citizenship would in any way reduce the control of the UK courts in the matter, as long as Charlie is in the UK.

      As per one of my earlier comments, the judge has remained seized with the matter (good for him!) and it was reported:
      Judge Nicholas Francis said the doctor should come to London to see Charlie and meet other experts. At the end of an eight-hour court hearing Thursday, Francis said "no hearing can resume" until that happens."
      Any confirmation or contradiction of this?

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    4. from an article at The Independent
      http://www.independent.co.uk/news/health/charlie-gard-us-citizenship-congress-american-treatment-uk-high-court-appeal-life-support-turn-off-a7848391.html

      ---
      attempts to make a clickable link:
      [url]http://www.independent.co.uk/news/health/charlie-gard-us-citizenship-congress-american-treatment-uk-high-court-appeal-life-support-turn-off-a7848391.html[/url]
      [url=http://www.independent.co.uk/news/health/charlie-gard-us-citizenship-congress-american-treatment-uk-high-court-appeal-life-support-turn-off-a7848391.html}article in Independent[/url]
      ---

      "nucleoside therapy has a 10 per cent chance of improving Charlie's condition, adding his research “clearly indicates” it reduces muscle weakness in patients with a similar genetic disorder." which again raises my concern that Charlies seizures may become tonic and/or clonic.

      “These are small numbers, but with very rare diseases we must use every patient and gather as much detail from each patient as possible.” That's not likely to sit to well, since it clearly shows a strong motivation to use Charlie for experimental purposes. I don't fundamentally object to that, but it will require careful oversight and forthright acknowledgement that it could cause harm to Charlie.

      Delete
    5. and when the Democrats shoot down the wall bill, the GOP can yell, "they killed Charlie"

      Delete
  51. Great. So poor Charlie has now become our latest lab rat. I say that with sarcasm. As a parent who never felt I 'owned' my children. Poor Charlie. :(

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  52. Of course parents don't "own" their children. Of course there are bad parents, and there are sometimes situations where all of us parents make horrible, misinformed decisions. The problem is that in this case, there is NO healing value that medicine can offer except for the experimental treatment! Additionally, there is a rift in the opinion of the medical community as to whether there is No medical hope or an extremely limited hope. Why tie the hands of the parents, and insist that the moral high road is the one the doctors choose for the child? Doctors have no expertise in morality, and no advantage over the moral instincts of the child's parents. They have no reason to be given preference in this moral decision. It should be a very high bar, indeed, that would remove parental rights. That bar hasn't even been attempted. It has been considered irrelevant. Grrr...Still growling...

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    Replies
    1. if it is a moral decision, then it is time for the doctors to disconnect the respirator and send Charlie to a church.
      otherwise, it is a medical decision, and that is EXACTLY what we send doctors to school for.

      right now, my best understanding of the prognosis is: do nothing and charlie dies when his heart becomes too weak to pump blood. or do the experiment, and in the best case, (and 90% likely) charlie dies when his heart becomes too weak to pump blood. in the worst case, Charlie recovers enough muscle capability for the seizures that now only show up on his EEG to actually cause his body to convulse, until he dies when his heart becomes too weak to pump blood; which would take a while longer.

      Delete
    2. note that "they try to move Charlie and he dies immediately" is somewhere in between best and worst case, but a definite possibility.

      Delete
  53. The Charlie Gard parents public supporters seem to think Dr Michio Hirano will be some kind of miracle worker.
    He is the doctor who offered the initial treatment only to withdraw his offer when he saw Charlie's medical records and learned Charlie was far sicker than he had been led to believe.

    Their supporters seem to think the treatment will work on Charlie the way it has with some other sufferers of mitochondrial disease, an idea encouraged by his parents.
    The public here aren't seeing the words Similar to.
    The treatment works only on those with a mitochondrial disease that affects only the muscles and even then it has to be in in mildest form TK2.
    They are ignoring the fact that the version Charlie has also affects the brain, his organs as well as the muscles. He is profoundly brain damaged and likely is in some form of PVS, judging by the video of his mom stroking his face, there was absolutely no physical response, not even a blink.

    Said doctor and parents claimed there was a chance his treatment could work and give him 10% improvement in muscle function with some claims of up to 56%.
    As has been mentioned above, should there be any improvement in his muscles, what would that do for his quality of life?
    He would still be blind, deaf, mute, profoundly brain damaged, totally reliant on a ventilator with all his organs failing.
    Would it mean he would now show physical signs of his epileptic fits?
    Would they be gentle twitches or violent thrashing about?
    Would it be the ability to open/close his eyes or move a toe?
    What do his parents expect to happen apart from the laughably ridiculous riding a bike and being a perfectly normal little boy as claimed by his mom?

    She said: "There is potential for him to be a completely normal boy but we don’t know, you just don’t know until you try. There’s 18 people on this medication already. The only side effect is diarrhoea. There’s been some amazing responses very, very quickly."

    What would they be satisfied with?
    At what point would the parents decide to do the right thing by Charlie?
    Would they want him at home hooked up to all sorts of machinery to keep him alive, confined to a bed?
    If so, how long before the stress and strains of looking after him 24/7 cause them to separate?
    How long before they decide he would be better off in hospital?
    Having him as the status quo, in hospital hooked up to all sorts of wires and tubes dead but not dead?

    Sad to say, i think the parents especially the mom are in denial, and this is to be expected, the maternal instinct is strong and normal.
    Should they lose the case, i would not be surprised if they appealed it all the way to the supreme court.
    Delaying the inevitable.
    The media post cute pictures of Charlie, old pictures of Charlie on the hospital roof, looking like a normal sleeping infant, only recently have we seen a couple of pictures where we can see how swollen Charlie is, even though he is nearly one and growing.
    Swollen, poorly Charlie is not what the parents want the public to see.
    The MRI scan was taken for 4 hours rather than the 30 mins the parents demanded (why did they want only 30 mins?)
    The court lawyer said it makes for sad reading.
    How bad can it be now given what we already know?

    ReplyDelete
  54. CNN reports that doctors agree there is no hope for treatment to work and Charlie’s parents have given up the fight. It is a horrible tragedy for all involved.

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    Replies
    1. as promised, his parents have my sympathy for their loss.

      Delete
  55. Here's the end of the story, from Great Ormand Street Hospital (GOSH)

    http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

    Look at the bottom for the link to the statement.

    "GOSH’S POSITION STATEMENT HEARING ON 24 JULY 2017
    Respondents"

    "7. At the first hearing in Charlie’s case in March, GOSH’s position was that every day that passed was a day that was not in his best interests. That remains its view of his welfare. Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response. In GOSH’s view there has been no real change in Charlie’s responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge’s finding, in April, that since his brain became affected by RRM2B, Charlie’s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.

    8. Throughout, his parents’ hopes have been sustained by advice received from overseas. Mitochondrial disorders comprise a specialised and small international field. The experts in that field meet, collaborate and exchange ideas on a very regular basis and it is that valued collaboration that allows progress to be made and patients to be provided with the best possible care. Professor Hirano (“the Professor”), whose laboratory research has an international reputation, is very well known to the experts at GOSH and he communicated with them about NBT treatment for Charlie at the very end of December. In January, GOSH invited the Professor to come and see Charlie. That invitation remained open at all times but was not taken up until 18 July after being extended, once again, this time by the Court.

    9. In the months between January and July, the Professor provided written and oral evidence for the best interests hearing in April and, after the Court decided that NBT was not in Charlie’s best interests, he went on to provide further written evidence for the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the letter indicating that he had new information that changed the picture for Charlie, that brought this case back before the High Court.

    10. When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie."

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    Replies
    1. Paragraph 10 has very much diminished my previously moderately positive opinion of Dr. Hirano. I had come to view him as someone much more interested in seizing his opportunity to try to grab some data that would further his research, while regarding benefit to Charlie as a nice bonus.
      My opinion now is that his action has been somewhere between irresponsible and malpractice. If I were his dean, it would be seriously thinking about ripping him a new one.

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    2. I was willing to overlook opportunistic. however, not being bothered to see if his proposed test subject was suitable is more than a little bit careless.

      Delete
  56. I glad that the parents ended their legal appeals and chose to spend their finals days with their son. It's sad. But it's best for the family. But it begs to question. If Charlie can feel pain which I do not doubt, can he not also feel his mothers touch? Or how it feels to be lovingingly held, touched, loved? Not all must be lost right? His entire existence can't be all pain right? I understand he cannot hear or see but he feels. He's got to have some sort of emotional connection to his parents. I'd hope. Or maybe it's wishful thinking.
    At any rate. I'm saddened by such a cruel disease.... and for any infant/child loss.

    ReplyDelete
  57. This case has triggered a resurgence in Jahi McMath stories in the media - all misinformed, and most out of date.

    ReplyDelete
  58. The one part of this story I've never been totally clear about is: what exactly does it mean that GOSH wouldn't let the parents take Charlie to America? Are/were they literally, legally, not allowed to take him out of the hospital, and they would get arrested for kidnapping or something if they tried? Or does it just mean the hospital wouldn't agree to help move him, so in practice he can't leave since he'll die without the machines he's hooked up to?

    ReplyDelete
    Replies
    1. my best guess is they refused to order a transfer, which would mean that any physical removal of Charlie from their care would legally be against their wishes, and therefore any negative result could not be blamed on them. I don't know whether they would have gone so far as to physically resist an attempt to remove him, and fortunately we won't have to.

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    2. My understanding is that the no-transport ruling came from the court, not GOSH. The court felt that pursuing this treatment was not in the child's best interest, and felt that the family would try to pursue it if they took the child from the hospital. Second, the hospital felt that transporting him to anything but a hospice facility would not be practical or advisable, given the level of care he needed.

      The latter question came up again today in court, because the parents want to take him to their home for the final week so that friends and family can gather to pay last respecs. Their lawyer said today that some nurses and a doctor from GOSH have volunteered to care for him during that time, but the family hasn't been able to find an intensive care specialist. The hospital says that's essential for his care. The court has given them until noon on Thursday to try to work something out with the hospital that would make home care possible. The court said that if they can't, then he will go to a hospice facility where the appropriate staff and services are available.

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    3. The April judgment of Mr. Justice Francis is worth a read.
      http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

      I will add that from what I can tell, the conduct of Justice Francis throughout this matter has been very highly commendable.

      Delete
  59. It has just been announced that little Charlie Gard has died. I hope that there are no further recriminations towards the staff at GOSH. They always did what they thought best for the boy and had to defend themselves against the parents who were quite evidently in denial and the butters who hooked themselves to this tragic bandwagon.

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  60. Whoops, Nutters not butters!

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  61. some of the armchair quarterquacks on some of the more politically active boards were unbelievable in their willingness to allow doctrine to supercede facts.

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  62. an excellent overview for those who are still questioning the role the courts had and why charlie couldn't have the experimental therapy:

    https://medium.com/@charlesarthur/charlie-gard-facts-medicine-and-right-wing-fictions-e4b933ed8c12

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    Replies
    1. Thanks Ken. Bookmarked for future reference.

      Delete
  63. Israel Stinson's mother, with legal backing from the Life Legal Defense Foundation, has just filed a motion challenging the constitutionality of CUDDA, CA's universal determination of death act. Professor Pope has a link to the filing on his Medical Futility Blog.

    They argue that Fonseca was not awarded due process because she was deprived of her right to a third independent examination. Her choice of physician, of course, was Alan Shewman. The court rejected this choice because of his bias against the concept of brain death. They also cite the Charlie Gard case as an example of the state usurping parental authority to make medical decisions on behalf of their children.

    If the court agrees it could signal the end of the UDDA statutes across the US. The hearing is scheduled for August 11th.

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    Replies
    1. Right to life organizations like LLDF are trying to kill the UDDA by means of a thousand paper cuts through multiple court interventions like this. They actually complained in this brief that their crusade against brain death is draining their resources as if the judge should take that into consideration.

      Delete
    2. maybe it is time to make LLDF liable for medical expenses incurred from futile care done at their instigation.

      Delete
    3. But gee, they already have to foot the legal costs associated with always inserting themselves in these disputes. They have an agenda to advance and have no right to complain about bearing the costs of their crusade.

      American organizations such as theirs were in the forefront in contributing false hope to the Gard family's quest for futile treatment.

      If I believed in hell there would be a special corner reserved for folks like this.

      Delete
  64. When the US prof's name first appeared, I google scholar searched his name and found several article he had published. Patient care and patient selection was lacking in those that were not behind pay walls. I doubt that Charlie's Mum could have read any of them with much comprehension, I found it hard to follow specifics.

    Then there are the "eight doctors" who said Charlie could be helped. I think it needs being mentioned that the two from Spain are NOT Doctors of Medicine, but PhDs who have no medical training, but are chemists by profession.

    ReplyDelete

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