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We want black and white answers in medicine…but the Charlie Gard case reminds us that we can sometimes founder in shades of gray.

We dissect the multiple facets of this tragic story. Watch the Facebook Live video and lend your voice in the comments.

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15 Responses to “The Short, Sad Story of Charlie Gard”

  1. Just A. Punter

    As a parent and husband of patients with an ultra-rare disease in the UK, I think you should go through your ‘show’ and correct some of the major inaccuracies you have made and re-record your show. As a family we depend on good expert from our medical professionals, what you have put forward here is anything but. It is disgusting if it is supposed to be factual.

    • ZDoggMD

      Please help me understand what errors you think are there and what you feel the corrections should be. Thank you!

      • Just A. Punter

        I will but it will take me time. I have two disabled people to look after. Maybe when I get them to bed tonight I will be able to watch it again and take notes. Can you put the link up to the NYT story you used, so I can check that over as well.

        • Just A. Punter

          Don’t bother about the link to the Sun story. Giving me a link to a National Enquirer from 2001 would be better.

  2. Valerie Foltz

    It’s all about money for NHS….are the parents criminals? No….so their leaving the UK should not even be an issue. Normal is also highly overrated

  3. exMGH

    Thanks for the thoughtful and empathic discussion of this gut-wrenching situation. I’m reminded of the battles (political as well as medical) over Terri Schiavo a decade ago.

    As a clinician/researcher by training, I don’t know how dispassionate or analytical I would be if my own child were in this situation. My heart goes out to all involved.

    I know nothing about MDDS. I’m confused, however, about why the experimental treatment that the parents want isn’t simply delivered at Great Ormond Street Hospital. I doubt that the protocol is site-dependent. Doing so would avoid the transport risk and allow continuity of care.

    The cynic in me wonders whether not doing this is part of the calculus of future costs should it prolong the child’s life. Again, we saw this in Terri Schiavo and among countless other people in persistent vegetative states and similar situations. It’s never an easy call, especially when you move from ethical theory to familial reality.

  4. Just A. Punter

    Never been any mention of therapy working in rats with the same mutation. Might work in mice but hasn’t been tried yet.

    The hospital in the US did not say it would do it for free. That was the whole reason for the gofundme campaign to raise £1.3m ($1,676,350.00 approx – not $1 trillion).

    You will never get inside sources in the NHS. Don’t say yet, because it will not happen. They would not violate patient confidentiality to give you or our blog information as they would immediately be struck off and fired. I also would think that you would not encourage them to do that either. You have certainly not made that clear.

    The NHS is not a socialised medical system. It is a comprehensive medical system free at the point of use for every single citizen just like all other OECD members, except the USA. We have a conservative government.

    The court system does not represent the medical team. There were representatives at all of the different courts for Mr and Mrs Gard, Charlie Gard, and the Hospital. The different courts were the Hight Court, The Court of Appeal, The Supreme Court and then the European Court of Human Rights.

    As far as I am aware, the hospital have never set a date. No press coverage of the hospital setting any date.

    “Socialised tyranny” is a bit beyond the pale. “There’s medical ethics, there’s socialised medicine” The health system has nothing at all to do with it and I have previously stated that it is not socialised medicine. It is paid for, not subsidised, by our taxes and national insurance.

    You need to look at the Neurologist’s evidence that was presented in the video conference to the Supreme Court hearing.

    Speaking about a press article on what the doctor said. Not factually correct because it has never been tried on someone with Charlie’s mutation. Again, look at the Supreme Court evidence.

    The European Court of Human Rights only made one decision. That there was no need for them to be involved because previous courts had got it right.

    “The child isn’t conserved” Actually the child does have an independent voice speaking for him. Not sure if this is conserved as you mean it. Someone else is making the decisions for the child in court – not the parents.

    British Parliament are not fighting over the fate if this child. British Parliament are actually not sitting at present. The Government are not trying to set a precedent because they are not involved at all and never have been. It is the medical team who decided with the parents to go to court – not the government. Just look at the cases on each of the court’s websites – totally incorrect.

    My story. My wife and son aged 9 years old suffer from an ultra-rare disease. They are two of 27 known patients globally and my wife and son are the only two in our country. I am in contact with with 13 of those patients or their parents. I spend my life doing research into their condition. Our NHS pays the approx £250,000 a year for the orphan drugs and treatments for my wife and son and will continue to do it for the rest of their lives.

    All my information here comes from the judgements in all the court cases which you should have read – not from the press.

    I should add, my son is treated at Great Ormond Street Hospital and has been for years. My wife being an adult is treated at another hospital in London. We do not live in England we live in another part of the UK. Both my wife and son are American (and British) As an ultra-rare disease family, we know more about living with our disease than any doctor, probably in the world, but certainly in our country. It is us that informs them.

    You need to use empirical research to speak on something like this not stories in the Sun and if you are going to speak about the NHS then maybe know something about it as well. Someone posted your video on to our closed global rare-disease group. As rare patients and parents we were shocked at the inaccuracies in your piece.

    I feel deeply sad for Charlie Gard and his parents. They are going through hell. I also feel deeply sad for the medical teams looking after Charlie, I also feel sad for the lawyers and especially the judges who are having to make the decisions. It is a very, very sad case that should be reported with facts, not innuendo and made-up jokes..

  5. Just A. Punter

    Wow! You have actually deleted my post, that you requested.

    • Just A. Punter

      Unusually for me, I didn’t keep a copy of the post you deleted. Could you please go into your WordPress console and get a copy of it and email it to me at [email protected]. Thanks.

        • Just A. Punter

          Would you like me to go through the video again and recreate it?

  6. Lisa Ann Walker

    I have a .multitude of feelings about this tragic situation. However, as a 20+ year Paramedic and ER/ICU/CCU RN now, I believe there comes a point when these “experimental measures or extreme measures should be forgone. I think giving the mother unrealistic hope (she is a layperson, not a clinician) was morally wrong of the NY neurologist. That’s first, additionally, to those who believe the baby would be better off at home, I ask how many of them have ANY experience in what it takes to bring any critically ill patient home? How many nurses, respiratory therapists, nursing assistants, physical therapists it take to keep all the machines running and continue proper patient assessment ? What happens when Charlie has his ventilator alarming, and the parent’s activate the EMS system for assistance ? Ultimately, in my opinion, there a 3 main things going on here… first- this child is deteriorating on what sounds like a very rapid timeline. The time that the parent’s are spending might be better used to actually comfort this baby. Next, what about other patients who may be suffering from lack of care from their provider while that provider is busy with this baby (what has almost 0 change of recovery? What about the caregiver strain on both of the parents? I believe that this false hope is just delaying the natural stages off grief. The parents will not be able to even begin their own grief process while this miniscule experimental treatment. What about the parent’s relationship with one another? Many studies here in the US bear out the incredibly high divorce rate among couples who’s child has these severe medical diseases.
    Thank tou

  7. Cynthia Castillo

    As an icu rn and mother of 4 healthy children I can’t help but be pulled by this story. I can’t say I don’t feel for the parents because I do. It would break me in some ways to have a terminally ill child. However, as a nurse I know that staying alive is not living. This child will not live a normal life. He will never ride a bike, get married, have children of his own and grow old carrying with him years of wisdom. To live essentially. Additionally, he will have a life of multiple bouts of hospital stays from various ailments that being bedbound entails. It is painful to be a patient with chronic illnesses constantly undergoing tests. On the science side of the spectrum had they had been able to identify his disease earlier then maybe he wouldn’t be as critical. NHS’s resistance could have brought this disease the attention it deserved as well as a potential for a cure in the future to this child’s disease and maybe others similar to it.

  8. Deb Goodman

    I think it would be very appropriate if you had folks who work with special needs kiddos or terminally ill kiddos chime in.


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