Parents Of Charlie Gard: We Are About To Let Our Beautiful Little Charlie Go
[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
God bless this little family.
Dana (023079) — 7/24/2017 @ 5:55 pmyay Pope Francis
you’ve been nothing but a rock in this ordeal
happyfeet (28a91b) — 7/24/2017 @ 6:03 pmThis 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) — 7/24/2017 @ 6:05 pmComing soon to single payer health care near you.
Bang Gunley (5a4596) — 7/24/2017 @ 6:10 pmCharlie 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) — 7/24/2017 @ 6:35 pmThis 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) — 7/24/2017 @ 7:20 pmGovernment sanctioned murder.
Just what we have to look forward to it the left gets its way.
NJRob (6f64a4) — 7/24/2017 @ 7:22 pmGod bless you Steve. Sorry for your loss.
NJRob (6f64a4) — 7/24/2017 @ 7:23 pmThis Pope did what none of my Protestant friends could.
Convince me not to be a Catholic.
Steve57 (0b1dac) — 7/24/2017 @ 7:26 pm@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
Steve57 (0b1dac) — 7/24/2017 @ 7:35 pmMr. 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) — 7/24/2017 @ 7:42 pmBeautifully stated, Dana. Thank you.
My fervent wish for the Gard’s and for you, Steve, is God’s peace.
Ed from SFV (3400a5) — 7/24/2017 @ 7:45 pmSteve, you are in my thoughts and prayers. You need neither, but I offer both.
Simon Jester (bcb31a) — 7/24/2017 @ 7:45 pmLike I said Mr. Feets. I wasn’t the first. I won’t be the last.
God it sucks.
Steve57 (0b1dac) — 7/24/2017 @ 7:48 pmthis is why our elected representatives like Shelley Caputo voted to exempt themselves from the obamacare
happyfeet (28a91b) — 7/24/2017 @ 7:51 pmSimon, I need your prayers. Very much.
https://www.youtube.com/watch?v=1C3q3Zr_R8E
Steve57 (0b1dac) — 7/24/2017 @ 7:54 pmThe kindness of the donors was touching, but there comes a point where there IS no hope.
Kevin M (752a26) — 7/24/2017 @ 8:20 pmBy the grace of God I have received it. It is my fervent wish that you receive the same.
Steve57 (0b1dac) — 7/24/2017 @ 8:29 pmWhat I mean is, I can bear the pain. It was touch and go for awhile.
Steve57 (0b1dac) — 7/24/2017 @ 8:31 pmBut 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) — 7/24/2017 @ 8:33 pmThere is never hope in April Or any other month. That’s just the vicious truth.
Steve57 (0b1dac) — 7/24/2017 @ 8:51 pmSteve,
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) — 7/24/2017 @ 9:23 pmSorry for your loss, Steve.
narciso (d1f714) — 7/24/2017 @ 9:35 pmMy wife Yuka. Think of her.
Steve57 (0b1dac) — 7/24/2017 @ 10:42 pmShe suffered ten times the loss I did.
Steve57 (0b1dac) — 7/24/2017 @ 11:01 pmYuka will be in my prayers. May God help her find peace in her heart and remain with Him.
NJRob (7f4bec) — 7/24/2017 @ 11:06 pmI spent too many years away after 9/11. Yuka remains in my prayers.
Yuka means beautiful flower in Japanese, BTW.
Steve57 (0b1dac) — 7/25/2017 @ 6:14 amSteve57 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) — 7/25/2017 @ 7:33 amNHS 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) — 7/25/2017 @ 7:54 amThank 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) — 7/25/2017 @ 8:01 amThe 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) — 7/25/2017 @ 8:03 amI appreciate the outpouring of grief. I really do.
Steve57 (0b1dac) — 7/25/2017 @ 8:51 amThe Christian thing is to pay back.
Steve57 (0b1dac) — 7/25/2017 @ 8:55 amRecall 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) — 7/25/2017 @ 10:04 amSorry 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.
Absolutely. In America, we have the tools to override that. In disarmed UK, they don’t.
Patrick Henry, the 2nd (e04f50) — 7/25/2017 @ 1:44 pmSee “Lonestar Planet”
Richard Aubrey (0d7df4) — 7/25/2017 @ 2:54 pmso…
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) — 7/25/2017 @ 4:00 pmI didn’t engage.
Steve57 (0b1dac) — 7/25/2017 @ 5:07 pmBurrito Adventurer.
I was thinking of you Mr. Feets.
https://www.amazon.com/Burrito-Adventurer-Squadron-Mexican-Expeditionary/dp/1502332671
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
Steve57 (0b1dac) — 7/25/2017 @ 7:25 pmit’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 pmPatrick Henry, I don’t have words.I appreciate the message.
Steve57 (0b1dac) — 7/25/2017 @ 7:42 pmm
Yeah. Air Force chicks.
Steve57 (0b1dac) — 7/25/2017 @ 7:45 pmEvery 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) — 7/25/2017 @ 11:05 pmMuch thanks to you for your fascinating infomation
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madalin stunt cars 2 (ed329b) — 7/26/2017 @ 12:10 amThe 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)
Sammy Finkelman (02a146) — 7/26/2017 @ 8:45 amFrom the same Wall Street Journal article:
Also:
Sammy Finkelman (02a146) — 7/26/2017 @ 8:51 amThe 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) — 7/26/2017 @ 9:22 amYou 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.
Richard Aubrey (0d7df4) — 7/26/2017 @ 2:37 pmWhat happens to the parents if they need health care? Think they’re on a list, the kind you don’t want to be on?