Patterico's Pontifications

7/24/2017

Parents Of Charlie Gard: We Are About To Let Our Beautiful Little Charlie Go

Filed under: General — Dana @ 5:53 pm



[guest post by Dana]

Heartbreaking decision announced today from the parents of Charlie Gard. They have decided to end their legal battle to be allowed to take their son to New York for treatment. In the words of Connie Yates, Charlie’s mother:

“The last 11 nearly 12 months have been the best, the worst and ultimately life changing months of our lives, but Charlie is Charlie and we wouldn’t change him for the world. All our efforts have been for him.

“We are about to do the hardest thing that we’ll ever have to do which is to let our beautiful little Charlie go.”

Time was of the essence in Charlie’s case, but it had run out far too soon:

The parents had been told by Professor Michio Hirano, a New York neurologist who has pioneered an experimental therapy for children with a similar condition to Charlie, that there had been a chance of helping their son. The case had become a cause celebre with support from the parents coming from Donald Trump and Pope Francis and a 500,000 signature petition calling on the hospital to let Charlie go abroad for treatment.

Miss Yates said it was “unfortunate” that Prof Hirano had not been given access to GOSH’s “raw data” in April – at the time of a previous High Court hearing – that showed “no actual evidence of irreversible brain damage”.

Two doctors had said further scans carried out last weekend had not shown “irreversible” brain damage, as the hospital had claimed earlier this year, but a new body MRI scan on Friday had revealed “irreversible” deterioration of his muscles that meant he was untreatable.

Miss Yates: “They [the doctors] both agreed that treatment should have been started sooner. There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now – time. A whole lot of wasted time.

“Charlie had a real chance of getting better. It’s now unfortunately too late for him.”

She went on: “We are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought.”

You can watch Charlie’s dad, Chris Gard’s statement below. Of note: “This has never been about parents who know best. All we wanted to do was to take Charlie from one world-renowned hospital to another world-renowned hospital in the attempt to save his life…” And they weren’t allowed to do this for their little boy. They weren’t allowed to follow through on their decision to do what they – Charlie’s parents – believed was in his best interest. That they also weren’t allowed to take Charlie home to die speaks to a frightening level of State control exerted over the lives of private citizens. Private citizens, who loved their child beyond all measure, saw their primary function as parents stripped away by powerful entities.

Here is a statement from Great Ormond Hospital:

“We have always paid tribute to the extraordinary courage and strength of Connie Yates and Chris Gard and their devotion to their son. Today our hearts go out to them as they face the most difficult decision that any parent should ever have to make.”

Our staff share the parents’ sadness over Charlie, whom they have cared for with dedication during the months he has spent at Great Ormond Street Hospital. We were heartened to hear their appreciation of our staff’s care in their recent public statement.

We seek to care for and support every parent who brings their child to Great Ormond Street Hospital and it is a source of great regret in the very rare cases when an agreement cannot be reached about what is in the child’s best interests.

This has been an incredibly complex case, going to the heart of medical ethics and when, and if, experimental treatment is acceptable for children suffering from rare diseases. We would like to acknowledge all those who have contributed their expertise and advice.

Chris and Connie have communicated their desire to spend time with Charlie. We appeal for them to be given the space and privacy they need at this heart-breaking time.

This from the very hospital that told them, repeatedly, no. Just, no.

May God comfort Charlie’s parents during such an agonizing time, and may He bring them some measure of peace in their decision. As their hearts break a hundred times over, I will quietly take courage from them, knowing that they have chosen to pay the highest price a parent can in order to know the fullest love possible: “To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken.”

(Cross-posted at The Jury Talks Back.)

–Dana

49 Responses to “Parents Of Charlie Gard: We Are About To Let Our Beautiful Little Charlie Go”

  1. God bless this little family.

    Dana (023079)

  2. yay Pope Francis

    you’ve been nothing but a rock in this ordeal

    happyfeet (28a91b)

  3. This is what I said. They ran out the clock. And they did not want to be upstaged by at other doctors or hospital. It’s the hospital administrators who were like that.

    Sammy Finkelman (dc1a80)

  4. Coming soon to single payer health care near you.

    Bang Gunley (5a4596)

  5. Charlie received the very best care the NHS single non-payer system was willing to provide. The quiet killers of the NHS know this will blow over in a few weeks and they can return to providing the cursory, delayed care for which they are so very justifiably infamous.

    Rick Ballard (264a24)

  6. This hits hard. And I don’t want to talk about it. Jesus said that when you pray you go into your inner room and pray in the dark. Braggarts have already received their reward.

    So I’m going to break the code here because maybe it will do somebody some good.

    The only child I am and and was ever going to have died of a birth defect. I’m probably one of the few who know exactly what these people are going through.

    The idea that a court could step in and and override my or my wife’s decisions is monstrous.

    Steve57 (0b1dac)

  7. Government sanctioned murder.

    Just what we have to look forward to it the left gets its way.

    NJRob (6f64a4)

  8. God bless you Steve. Sorry for your loss.

    NJRob (6f64a4)

  9. yay Pope Francis

    you’ve been nothing but a rock in this ordeal

    happyfeet (28a91b) — 7/24/2017 @ 6:03 pm

    This Pope did what none of my Protestant friends could.

    Convince me not to be a Catholic.

    Steve57 (0b1dac)

  10. @NJRob, I appreciate the well wishes. It does help. a lot.

    Yes, I’ve suffered loss. I’m not the first, and I won’t be the last. And no I don’t think I’ll ever get over it.

    I’m going to shut up about it.

    Matthew 6

    5And when you pray, do not be like the hypocrites. For they love to pray standing in the synagogues and on the street corners to be seen by men. Truly I tell you, they already have their reward. 6But when you pray, go into your inner room, shut your door, and pray to your Father, who is unseen. And your Father, who sees what is done in secret, will reward you. 7And when you pray, do not babble on like pagans, for they think that by their many words they will be heard.…

    Steve57 (0b1dac)

  11. Mr. Steve I’m sorry

    i hate that story

    the story of how NG lost picklehead number two is infuriating

    they had to fight to get lil baby girl stabilized on the respirator

    and she stabilized and she had color and all that

    but that was the give-birth hospital

    the defective babby hospital was across the street – where she could get surgery to repair the things what weren’t right

    so an hour after she was stabilized they had to switch her to a mobile respirator so she could go to the nicu

    right across the street

    and she didn’t take to that respirator, the mobile one

    i think they had her for maybe 96 minutes

    happyfeet (28a91b)

  12. Beautifully stated, Dana. Thank you.

    My fervent wish for the Gard’s and for you, Steve, is God’s peace.

    Ed from SFV (3400a5)

  13. Steve, you are in my thoughts and prayers. You need neither, but I offer both.

    Simon Jester (bcb31a)

  14. Like I said Mr. Feets. I wasn’t the first. I won’t be the last.

    God it sucks.

    Steve57 (0b1dac)

  15. this is why our elected representatives like Shelley Caputo voted to exempt themselves from the obamacare

    happyfeet (28a91b)

  16. Simon, I need your prayers. Very much.

    https://www.youtube.com/watch?v=1C3q3Zr_R8E

    Dr. Paul Copan – Is God a Moral Monster?

    Steve57 (0b1dac)

  17. The kindness of the donors was touching, but there comes a point where there IS no hope.

    Kevin M (752a26)

  18. My fervent wish for the Gard’s and for you, Steve, is God’s peace.

    Ed from SFV (3400a5) — 7/24/2017 @ 7:45 pm

    By the grace of God I have received it. It is my fervent wish that you receive the same.

    Steve57 (0b1dac)

  19. What I mean is, I can bear the pain. It was touch and go for awhile.

    Steve57 (0b1dac)

  20. But was there hope in April?

    Perhaps Charlie’s parents were deluding themselves. But thanks to the administration of Great Ormond, we will never know.

    kishnevi (6a5d3c)

  21. There is never hope in April Or any other month. That’s just the vicious truth.

    Steve57 (0b1dac)

  22. Steve,

    I cannot imagine the cross you’ve had to bear. I can only imagine how it was for my parents when I was an infant in the ICU well before the modern technology we have now. Thank you for sharing a little piece of your struggle with us.

    Please continue to find peace and accept God’s grace.

    Thank you.

    NJRob (7f4bec)

  23. Sorry for your loss, Steve.

    narciso (d1f714)

  24. Yes, you can. Any one who has beared children can.

    Steve57 (0b1dac)

  25. My wife Yuka. Think of her.

    Steve57 (0b1dac)

  26. She suffered ten times the loss I did.

    Steve57 (0b1dac)

  27. Yuka will be in my prayers. May God help her find peace in her heart and remain with Him.

    NJRob (7f4bec)

  28. I spent too many years away after 9/11. Yuka remains in my prayers.

    Yuka means beautiful flower in Japanese, BTW.

    Steve57 (0b1dac)

  29. Steve57 at #6

    I am so sorry to hear this. My heart goes out to you. I’ll remember you in my prayers.

    Chuck Bartowski (bc1c71)

  30. NHS stole his last best chance. It wasn’t futile, but they made sure it was. It’s not clear why they were so obstinate, since the prolongation of suffering even if the treatment failed was negligible. In any case, it should not have been their call.

    SarahW (3164f0)

  31. Thank you for sharing, Steve57. I’m sorry for your loss. I know it is hard to talk about, but I think it helps us realize this happens and it matters.

    DRJ (15874d)

  32. The idea that a court could step in and and override my or my wife’s decisions is monstrous.
    Steve57 (0b1dac) — 7/24/2017 @ 7:20 pm

    I’m terribly sorry, Steve; and yes, it is.

    It as if in this case they were determined not to let the child get more of a chance than some other child, simply because the parents were able to obtain subtantial resources to go outside the system. The common line is that chance of improvement was uncertain, even unlikely, a fantasy, but it was less hopless than they argued. They spoiled what chance he did have to improve.

    I wonder if they were really afraid he would improve.

    SarahW (3164f0)

  33. I appreciate the outpouring of grief. I really do.

    Steve57 (0b1dac)

  34. The Christian thing is to pay back.

    Steve57 (0b1dac)

  35. Recall the authorities even gave them a hard time about letting a clergyman in the room. He was a Yank. Apparently, the Brit clergy feared getting on a priority list for the Liverpool Protocol.

    Richard Aubrey (0d7df4)

  36. Sorry for your loss Steve. As the parent of a special needs child who wasn’t supposed to live past 5 (but now is 10), I sort of understand how you feel.

    The idea that a court could step in and and override my or my wife’s decisions is monstrous

    Absolutely. In America, we have the tools to override that. In disarmed UK, they don’t.

    Patrick Henry, the 2nd (e04f50)

  37. See “Lonestar Planet”

    Richard Aubrey (0d7df4)

  38. so…

    what does endgame for charlie look like?

    i haven’t really engaged in the medical particulars

    how exactly does the NHS propose we kill him?

    happyfeet (28a91b)

  39. I didn’t engage.

    Steve57 (0b1dac)

  40. Burrito Adventurer.

    I was thinking of you Mr. Feets.

    https://www.amazon.com/Burrito-Adventurer-Squadron-Mexican-Expeditionary/dp/1502332671

    Burrito Adventurer 1: 201st Squadron – WWII Mexican Expeditionary Air Force (Volume 1) Paperback

    Notice I didn’t get you anything. I’ll be amazed if there’s a volume two.

    http://www.dtic.mil/dtic/tr/fulltext/u2/a398001.pdf

    THE MEXICAN EXPEDITIONARY AIR FORCE IN WORLD
    WAR II: THE ORGANIZATION, TRAINING, AND
    OPERATIONS OF THE 201st SQUADRON

    Steve57 (0b1dac)

  41. it’s weird when you add the word expeditionary it makes the whole air force thing sound kinda fun

    happyfeet (28a91b)

  42. Patrick Henry, I don’t have words.I appreciate the message.

    Steve57 (0b1dac)

  43. it’s weird when you add the word expeditionary it makes the whole air force thing sound kinda fun
    happyfeet (28a91b) — 7/25/2017 @ 7:27

    m

    Yeah. Air Force chicks.

    Steve57 (0b1dac)

  44. Every single NHS government stooge who had any part in denying the parents the right to try wherever they could to save their child deserves to be tried and convicted of willful murder. It won’t happen, mind, and every time it is brought up they will hide behind they expertise, their supposed good intentions, and so on. They still deserve to be considered vermin.

    C. S. P. Schofield (99bd37)

  45. Much thanks to you for your fascinating infomation

    ————————————————-

    madalin stunt cars 2 (ed329b)

  46. The Wall Street Journal reports that there are about 15 cases a year like this (10 so far this yaar) in the United Kingdom – where doctors go into court to force parents to agree to remove life sustaining TREATTMENT – – only we don’t hear about them because of court privacy rules.

    https://www.wsj.com/articles/charlie-gards-case-highlights-balancing-act-facing-u-k-courts-1500975002 (behind a paywall by maybe a Google search can get you this)

    Over the past two years, Britain’s High Court has weighed in on roughly 30 disputes over a child’s medical care, according to a government agency that provides legal guardians for children in such cases. There have been 10 so far this year. In the majority of them, doctors have sought to remove life-sustaining treatment against parents’ wishes.

    Most escape public notice because of court privacy rules. In recent weeks, a judge heard the case of another child suffering from a mitochondrial disorder similar to Charlie’s, according to a lawyer with knowledge of the case. The judge’s ruling hasn’t been published….

    Dominic Wilkinson, a professor of medical ethics at the University of Oxford, said that the approach to conflict between doctors and parents differs from country to country. “The U.K., though, is relatively unusual in the number of cases that it has dealt with in this way and in the preparedness of the courts to make decisions that are contrary to the wishes of the parents,” he said.

    U.K. judges often use balance sheets—though they didn’t in Charlie’s case—to weigh the benefits and burdens of continuing life support when calculating what is in a child’s best interests. In the U.K., where the National Health Service is straining for resources, the use of funds, space and staff is also often an issue in deliberations.

    In June last year, a judge used the balance-sheet process before ruling that a two-and-a-half-year-old, paralyzed and unresponsive after a traffic accident, should have his respirator removed, against the wishes of his mother, and receive only palliative care.

    When the court was hearing the case, the child had suffered three bouts of respirator-related pneumonia as well as urinary-tract infections. Doctors testified it was only a matter of time before a lung infection killed him.

    The child’s mother argued that those grim facts needed to be balanced against the fact that the child wasn’t in pain and that there was a chance for modest improvements.

    “The test to be applied by the courts in such cases is simply this: What is in the best interests of the child at the particular time in question, having regard to his welfare in the widest sense, not just medical, but social and psychological?” wrote an appellate judge who reviewed the case.

    Sammy Finkelman (02a146)

  47. From the same Wall Street Journal article:

    In 2014, parents of Ashya King, a 5-year-old boy with brain cancer, took him from a British hospital without informing clinicians and traveled to Spain, where they were arrested. A U.K. Court ordered their release and let the parents take the boy to Prague for proton therapy not offered by the National Health Service for his illness at the time. Ashya returned to school after treatment in Prague, according to U.K. media reports. The therapy he received is now becoming available in British hospitals.

    Also:

    Before Charlie’s case, one of the few others to receive significant public attention was that of a disabled 11-month-old, Charlotte Wyatt, in 2004.

    The judge in Charlotte’s case said that in reaching his view that the baby girl shouldn’t receive artificial ventilation or similar aggressive treatment “in the event of a disagreement” between the parents and the hospital, he had “of course been informed by the medical evidence as to the prospects and cost of her aggressive treatment.”

    In Charlie’s case, the hospital treating him, Great Ormond Street Hospital in London, considered providing him with an experimental nucleoside therapy funded by the National Health Service but decided not to do so after the child suffered a series of seizures and doctors decided the treatment would no longer help him.

    In the U.S., clinicians also regularly evaluate the burdens and benefits of keeping patients on life-support. But doctors, often fearing litigation, tend to continue treatment if a patient’s family wish them to do so, according to U.S. medical ethicists.

    “Very few doctors are going to take an action that is going to open them up to a career-ending lawsuit,” said a medical ethicist in the U.S. who asked not to be named.

    Sammy Finkelman (02a146)

  48. The Wall Street Journal has an Op-ed piece saying that Congress has until August 15 to repeal Obamacare “death panels” for Medicare patients, or what could lead to death panels.. Except that the bill says a three fifths majority is necessary to pass a resolution repealing it (This is merely the Senate filibuster rule but applies also to the House. The bill that is, amended the rules of the both houses of Congress)

    The Obamacare law created an Independent Payments Advisory Board. But a Congressional resolution is in order to prevent it from coming into existence if it is ready by Aug 15.

    The IPAB is required to write a plan to stay under Medicare caps established by the Obamacare law if actuaries find we are projected to exceed them. We are not at the caps yet but will be in some years.

    If Congress does not pass a bill changing the decisions of the IPAB, the Secretary of HHS is required to implement it.

    Obamacare explicitly prohibits rationing but what they would do is reduce payments to doctors and hospitals. So what we’d get is the degrading of Medicare to the level of Medicaid a process is happening now already but you could also get thigs like the Charlie Gard case…

    Sammy Finkelman (02a146)

  49. You are G. D. subjects and don’t you G. D. forget it. We will kill your kid and you’d better not make a fuss.
    What happens to the parents if they need health care? Think they’re on a list, the kind you don’t want to be on?

    Richard Aubrey (0d7df4)


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