Hospital Now Asking Court For New Hearing Regarding Treatment Of Charlie Gard
[guest post by Dana]
Here is an update on little Charlie Gard’s heartbreaking situation. Giving parents Connie Yates and Chris Gard a glimmer of hope, Great Ormond Street Hospital for Children has requested a new hearing in the case of their son:
Great Ormond Street Hospital for Children has today applied to the High Court for a fresh hearing in the case of Charlie Gard in light of claims of new evidence relating to potential treatment for his condition.
We have just met with Charlie’s parents to inform them of this decision and will continue to keep them fully appraised of the situation.
Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment.
And we believe, in common with Charlie’s parents, it is right to explore this evidence.
The preliminary hearing is set to take place tomorrow, with the hearing possibly continuing on Thursday.
While this is certainly good news, it’s nonetheless infuriating that precious time was wasted while Connie Yates and Chris Gard were stripped of their parental functions and official entities began making life and death decisions concerning Charlie. At least for now, Charlie Gard will live another day.
Also, two U.S. hospitals have offered to admit Charlie for treatment:
New York-Presbyterian Hospital/Columbia University Irving Medical Center said late Thursday that it would admit and evaluate Charlie “provided that arrangements are made to safely transfer him to our facility, legal hurdles are cleared, and we receive emergency approval from the FDA for an experimental treatment as appropriate,” according to a statement to The Washington Post.
Moreover, it is being reported that there has been an offer to send the necessary drugs to England so that Charlie could receive treatment there since the family has been forbidden to take him out of the hospital, let alone the country. Unfortunately, though, that option includes hurdling bureaucratic red-tape:
The U.S. hospital said another option could be to ship an experimental drug to London’s Great Ormond Street Hospital, where Charlie is being treated. The American hospital said it would provide instructions on administering the drug, provided the FDA gives clearance.
Sadly, in spite of these glimmers of hope, the parents are still being cruelly and unnecessarily jerked around by those in power:
The hospital fighting to remove 11-month-old Charlie Gard from life support blocked a Presbyterian minister invited by Charlie’s parents from praying at his bedside, and then reversed course and let him in.
Rev. Patrick Mahoney, pastor of Church on the Hill and Director of the Christian Defense Coalition in Washington, D.C., is one of several international human rights activists who flew to England to help Chris Gard and Connie Yates in their ongoing struggle to treat their son.
…
Connie Yates said initially she was “heartbroken” that Mahoney was blocked from being allowed to pray with Charlie, as she and her husband wanted.
“Thankfully,” after a “long process,” the hospital “did recant and allow me to go pray for him,” Mahoney told LifeSiteNews in an exclusive interview at 1:42 p.m. EST.
“I can’t even put it into words, it was so moving,” Mahoney said of praying with the baby whose parental rights and bioethics case has garnered international attention. “Connie, his mother, was feeding him. Chris was there. We laid hands on him and prayed together. He has beautiful stuffed animals all around him. And it was just a touching, beautiful moment.”
Mahoney noted that initially being denied access to pray with Charlie was troubling and emotionally stressful for Chris and Connie. He said in a news release before being granted permission that never once in 40 years of pastoral ministry had a hospital refused to let him pray with a patient.
“First they said they would have to check” if Mahoney could pray with Charlie, he told LifeSiteNews. “Then they said we couldn’t go. Then they gave [us] permission and then when we were going with his mother into the room, they denied us. And then we sent the news release out” and then finally received permission.
Obviously, Great Ormond Hospital and the State have faced tremendous pushback from Charlie’s supporters who have staged protests at the hospital, Downing Street and outside Buckingham Palace. Further, after Pope Francis set his Archbishop straight and clarified the Vatican’s support of Charlie and his parents, followed by President Trump’s public offer of help, we just might be seeing a slow turning of the tides. Maybe this is just me being hopeful that the obscene treatment of one small family will somehow be righted. Not undone, not forgiven, but at least as far as one little life is concerned, permission to allow help for him will be granted.
A protest is scheduled outside of the hospital today along with the delivery of a petition which has 350,000 signatures on it supporting the cause of Charlie and his parents.
(Cross-posted at The Jury Talks Back.)
–Dana
Still mind-boggling that loving and conscientious parents can be rendered so utterly impotent in matters concerning the life and death of their child. A business decision of the worst sort.
Dana (023079) — 7/9/2017 @ 9:19 amThey are just unforgivable, as bureaucrats usually are.
They are just running out the clock with this new request for another hearing.
Patricia (5fc097) — 7/9/2017 @ 9:39 amProtesting outside the hospital is all very well, but the vermin who made this vile decision will take little notice until you set up a Guillotine outside their offices and start marching the bastards out.
Goddamnit! This is why I hate and fear Government run (or substantially meddled in) Healthcare. If there were no such, and Charlie’s mum and dad couldn’t afford his care, wouldn’t take him to the right people, or whatever, it would be a tragedy but also not really my business. The State in this case has acted on behalf of ‘ther People’ to commit an abomination. As one of ‘ther People’, I resent evil being done in my name.
C. S. P. Schofield (99bd37) — 7/9/2017 @ 9:41 amThousands of Charlie’s and I wonder how we get focused on one as a Cause. Everyone feels such compassion for a child they don’t know. The sub-humans auger their agenda and sides emerge. Is he a composite of The Children, the innocent ground up by Life as we know It? Trump gets sentimental about ‘the beeyootiful babies’ and suddenly he cares about all children everywhere? Words are cheap. Watch what the compassionate hordes DO,not what they say.
Ben burn (ae48b8) — 7/9/2017 @ 9:51 am350 signatures? Huh. “Can you hear the people sing?”
Richard Aubrey (7b120b) — 7/9/2017 @ 9:52 amCharlie is getting attention because his death would be the result of a government decision. We can’t stop every bad thing from happening, but we should be able to stop or correct government wrongs.
DRJ (15874d) — 7/9/2017 @ 9:56 amRichard Aubrey,
350,000 signatures.
Dana (023079) — 7/9/2017 @ 10:00 amTrumpcare means a lot more petitions.
Ben burn (ae48b8) — 7/9/2017 @ 10:08 amCharlie is a symbol only one of many sentenced to the death panels of the nhs
narciso (d1f714) — 7/9/2017 @ 10:22 amif charlie had popped outta leggy meggy he’d be in high cotton now booba
happyfeet (28a91b) — 7/9/2017 @ 10:50 amDana. Meant to say that. the “k” got left out. I learned to type on a manual whose keyboard sloped up at 45 degrees and each key required maybe ten pounds of pressure to make a dent.
Richard Aubrey (0d7df4) — 7/9/2017 @ 12:56 pmPresumably, one or another politician will see this as an issue for his next campaign.
The thing about the prayer is just because. They’re assholes and they want to asshole. It also reminds the subjects that they’re subjects and they’d damned well better not forget it.
Charlie is a symbol only one of many sentenced to the death panels of the nhs
As opposed to the current system here, in which the death panels consist of insurance company bureaucrats.
, it would be a tragedy but also not really my business
Would it not be your business and mine?
kishnevi (158466) — 7/9/2017 @ 1:01 pmI support the parents because I believe in parental rights. However, the baby is in great pain and there is no chance the baby will get better. I side with the parents legally, but morally I think they are awful people for letting their baby suffer so much. The difficult thing about parenthood is that sometimes we need to make decisions that we can’t stand but which is the right thing to.
Daniel (b5fc30) — 7/9/2017 @ 1:02 pmI do have to wonder why (apparently) no clergy from the UK seem to care. Is Mahoney the only man of the cloth who wanted to pray at Charlie’s bedside?
kishnevi (158466) — 7/9/2017 @ 1:05 pmKishnevi,
We can appeal insurance company denials to the State Insurance Board or other authorities, or we can sue the insurance company. Those options are not ideal but they are remedies. We have no remedy with government except public pressure like this case, and not everyone can do that.
DRJ (15874d) — 7/9/2017 @ 1:09 pmAppeals and suing in court is what the Grands did (and still are doing). The surface may look different, but the substance is the same.
kishnevi (158466) — 7/9/2017 @ 1:12 pmI don’t think it’s the same. A hospital couldn’t prevent the family from moving this child to another hospital, if one were willing to take him (as 2 US hospitals are here). An insurance company couldn’t prevent the family from paying for care if they had the money, as this family does. But the government can do both.
DRJ (15874d) — 7/9/2017 @ 1:18 pmif they had the money, as this family does.
Which,as I understand it, they have because of a GoFundMe campaign (or similar) that succeeded because of the publicity involved in this case.
Suppose they didn’t, suppose they were Americans with a US insurance company that refused to pay because the treatment was experimental, not FDA approved, etc.
Charlie Gard would die because his family didn’t have enough money. Should Charlie’s life depend on how successful a GoFundMe campaign his parents can manage?
kishnevi (41a4d3) — 7/9/2017 @ 1:53 pmYes, that’s true. It is unfortunate that people die but we don’t have unlimited knowledge or resources. But if someone has options and resources, we don’t want government stopping them from using them.
DRJ (15874d) — 7/9/2017 @ 2:15 pmMoney matters in healthcare. It matters in almost everything. It’s not ideal but it’s better than every other alternative.
DRJ (15874d) — 7/9/2017 @ 2:16 pmIf ever there were a no-brainer decision to withhold treatment based on risk/reward, this is it. Should the State pay at least $1 million for experimental treatments for each person? I don’t see how we can. I just don’t.
However…denying one the use of private means to save a life? Unconscionable.
The Pope can eat it, too. How that Archbishop remains in office is well beyond my understanding.
Ed from SFV (3400a5) — 7/9/2017 @ 2:34 pm@ Daniel,
I have not read any reports that state that the baby is in pain. Can you provide a link?
Dana (023079) — 7/9/2017 @ 2:38 pmThere are options in us Healthcare, fir now, there is no choice in the nhs
narciso (d1f714) — 7/9/2017 @ 2:39 pmMoney is the bottom line here. She t is a business decision. That it’s a life is secondary. Such is the system.
Dana (023079) — 7/9/2017 @ 2:40 pmEh… “This is a business decision.”
Dana (023079) — 7/9/2017 @ 2:41 pmI’ve had first-hand experience with a rare disease, Ed. What seems like a waste of money to us is sometimes not the case, because it can lead to discoveries that benefit many people. This is especially true with genetic diseases since our knowledge in this area is so limited. We don’t know what is worthwhile and what isn’t.
Our rare family disease cost hundreds of thousands, maybe even a million, for government to diagnose but it led to accessible treatments for a related disease (that we don’t have) that at one time was a death sentence for infants. No one had any idea that would be the result but it was.
DRJ (15874d) — 7/9/2017 @ 2:44 pmsee this is why you do not run off a Mr. Dr. Mike
i hope you have all learned a valuable lesson, and I look forward to a day when all the bunnies get to frolic in the meadow
happyfeet (28a91b) — 7/9/2017 @ 2:45 pmSo it seems to me that if a research hospital wants to help this baby and use that experience to further its genetic research, we should hope that happens. We don’t have to pay for it but let’s not stand in the way.
DRJ (15874d) — 7/9/2017 @ 2:46 pmI have discussed this type of issue with Mike K. I’m not sure what he knows about rare diseases or how he would feel about this, so it would be nice to have him here.
DRJ (15874d) — 7/9/2017 @ 2:48 pmIn cases like this, the hospital gets knowledge and experience and the family gets hope. Sometimes you don’t want to put yourself through being a guinea pig but sometimes you do. It’s a family decision but it’s something most want to do for babies, to give them a chance at life.
DRJ (15874d) — 7/9/2017 @ 2:50 pmWe were told that if a baby survives with a genetic defect, then there is hope they can improve. Most die quickly.
DRJ (15874d) — 7/9/2017 @ 2:52 pm@ happyfeet,
Nobody ran off Mike K. He is a grown man who chose to leave. Given how upset he was getting when he would stop by, it seems to have been a sound decision. But I do wish he would return as he adds plenty to the conversation.
Dana (023079) — 7/9/2017 @ 2:54 pmNot only does the family in question get hope but so too do an untold number of other families who will face similar circumstances. This becomes a win-win for doctors and patients alike. Unfortunately, government is involved.
Dana (023079) — 7/9/2017 @ 2:57 pmthere’s a way to disagree without being disagreeable
i see nothing for it but to double down in my efforts to be a positive role model in this respect
would it were there were just the “one grown man who chose to leave”
mr. milhouse
mr. red
our friend elissa
and the convivial Mr. daley
Mr. JD
Mr. Carlitos
i been working three jobs trying to keep this family together
and i’m tired Dana
i’m tired in my soul
but I won’t give up on you guys
give me strength lord i will pray
and i see you here tomorrow
Four years.
Four years go fast – let’s make the most of them. Treasure them. Savor them.
This is a reprieve we’ve received by Grace alone – and we should never forget that.
peace out
happyfeet (28a91b) — 7/9/2017 @ 3:03 pmDRJ – If the State wants to perform serious R&D, let’s collectively have that budget fight. Given the needs of so many for basic functionality across all manner of considerations, I am highly skeptical over the expense of many millions for so few. I truly hate that we face such limitations. I often struggle with God as to why He intentionally made us to suffer. I totally get the point is for us to seek Him out. That He demands we not over-value our mortal lives in this dimension is outrageously difficult to accept for most, myself most definitely included.
One example of politics wickedly derailing reasonable State funding of research is when AIDS hit the homosexual community so horribly. Funds for other diseases were shut off and dedicated to AIDS. It was done haphazardly without regard to efficacy and the promise of success in the other suddenly out-of-favor causes. This was a genuine tragedy. The CDC has become ridiculously politicized and won’t even publish good data – that WE paid for! It routinely publishes false data which advances favored narratives. Further entrusting the State to direct R&D? No, thank you.
I would love to fashion good solutions which would alleviate, or even mitigate, the horrendous pain so many are made to endure. All I can offer for certain is prayer.
Ed from SFV (3400a5) — 7/9/2017 @ 3:31 pmWe do have this discussion when we decide to fund the NIH and its branches, Ed. That is where most rare diseases are diagnosed and treated, especially genetic duseases. Not everyone who wants to go there gets invited because the NIH has a budget set by Congress and it presents Congress with the areas it wants to investigate and why it thinks they are important.
In addition, some big hospitals and medical schools also do research. In my experience, they either do it for humanitarian/charitable reasons or because they believe it will lead to genetic breakthroughs that will be profitable. That’s why, and it sounds strange, but patients and their families at all these places have to sign away their rights to discoveries made about their diseases, to the genetic products of their diseases, and any interest in any medical breakthroughs made. Patients can still be treated without signing but they won’t get the experimental treatments that are so expensive. On the other hand, because they are experimental, patients don’t typically have to pay.
DRJ (15874d) — 7/9/2017 @ 4:21 pmHere is a link to the NIH budget information if you are interested.
DRJ (15874d) — 7/9/2017 @ 4:43 pmAnd here is a link by disease. It’s interesting.
DRJ (15874d) — 7/9/2017 @ 4:44 pmI think Mitochondrial diseases like Charlie’s fall under the category of Aging and Neurodegenerative diseases, which includes things like Parkinson’s Disease. Research suggests there may be a mitochondrial defect in Parkinson’s so people with that disease may benefit from research regarding Charlie.
Also, here is a link to a fact sheet on clinical research of rare diseases.
DRJ (15874d) — 7/9/2017 @ 4:52 pmI sincerely hope that little Charlie gets a shot at this experimental treatment. But even if he does, we do well to remember that under any single payer scheme, we will not always have the President and the Pope joined together to see that your family gets the treatment they need.
Mike aka Proof (7d6e17) — 7/9/2017 @ 6:29 pmCan’t recall who said it, but single payer is actually single spender. They get to decide. There is no third party, such as a government insurance commission to whom to appeal an insurance company’s decision.
Richard Aubrey (0d7df4) — 7/10/2017 @ 4:30 pmWhat this boils sodwn to, what it should boil down to,is who has the last word in child’s medical treatment? ANd the obvious and proper answer is that child’s parents, not some nat’l or continent wide legal court. their decision mat be arguably oreven trulywrong, but it is their decision to make, and their child’s health is their responsibility to bear. end f stoy, end of discussion.
neocon_1 (63894c) — 7/11/2017 @ 8:37 am