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Charlie & dad; UK court ruling today confirms hospital removal of life-support

A second court has now doomed 9-months-old Charlie Gard to die inside a London hospital.

The UK Court of Appeal ruled this morning against the plea of parents Connie Yates and Chris Gard that they be allowed to take their failing son out of a British hospital for experimental treatment in the U.S.

The decision by Justices Andrew McFarlane, Eleanor King and Philip Sales affirmed a lower court ruling of April 11 that the Great Ormond Street Hospital (GOSH) keep Charlie on the premises and remove him from a ventilator and feeding tube.

As reported by The Guardian, the Appeal Court judges had been otherwise urged by Charlie’s lead attorney, Richard Gordon, that the case raised serious legal issues, including the possibility that Charlie might be being unlawfully detained and denied his right to liberty. Gordon argued, The Guardian reported, that,

“What is really at stake in this case is the state, on a massive scale, intruding in your right to private and family life.”

Charlie entered GOSH in October and was diagnosed as suffering from a form of mitochondrial disease that causes progressive muscle weakness and brain damage. Subsequently, his parents discovered that 18 people in the United States had been treated with an oral medication of naturally occurring compounds to remedy this rare condition. Reports have not identified the doctor who initially agreed to treat Charlie, but it was noted that his parents were aware that no cure was promised.

Attorney Gordon urged that the Appeal Court, “[S]hould not interfere with the exercising of parental rights… and stand in the way of their only remaining hope.”

Over 80,000 people around the world agreed with that position and generously pledged over $1.5 million in a GoFundMe campaign (#Charliesfight) to get him out of the hospital and into the experimental therapy.

GOSH attorneys pressed the Appeal Court to agree that the parents’ proposed treatment for Charlie would result in a “condition of existence which is offering the child no benefit.”

One can only sadly wonder, alternatively, what Charlie’s “condition” would have been if GOSH had released him—months ago– for the new therapy.

His parents never imagined that bringing their baby to a hospital meant they would lose the ability to remove him.  But that is what British courts have now decreed.

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Three UK Court of Appeal judges heard arguments today in the case of releasing a baby boy on life support to get experimental therapy in the United States. Justices Andrew McFarlane, Eleanor King and Philip Sales are expected to issue a ruling Thursday in a case reviewing a decision against the baby’s parents made April 11 by High Court Justice Nicholas Francis.

Imagine yourself in this drama, as the London parents, Connie Yates and Chris Gard.

After their son Charlie was born healthy in August, they brought him to the Great Ormond Street Hospital [GOSH] for care in October. After establishing a diagnosis of a rare and incurable disease, GOSH then prevents them from taking their failing son overseas for a “last chance” experimental treatment!

Parents stateside have watched a related development as Scott and Sheryl Crosier led a crusade to stop DNR orders from being placed on children without parental notice and consent. Their 3-months-old son, Simon, with Trisomy 18, was denied resuscitation and died. Multiple stories of medical bias against medically fragile children were presented to the Kansas legislature, which enacted Simon’s Law in April by resounding margins.

Britain has no such hospital decision-making protection for parents.

After Charlie’s parents tracked down a potential new therapy, they launched a GoFundMe campaign –in January– to raise funds for the expenses of taking their baby overseas, with this plea:

“We are running out of precious time with our baby, he can’t have this treatment in the UK so our only hope now is to get Charlie to America.”

Over 80,000 members of the public responded generously to pledge over $1.5 million to cover Charlie’s expenses… yet GOSH will not let Charlie leave the premises!

For months, Charlie’s parents pleaded that they did not think their son was in pain; insisting that “their fight was not them ‘being selfish’ in keeping Charlie alive but about exhausting all options for potential treatment.”

CHARLIE DETERIORATES
WHILE CONFINED IN LONDON
Today, according to various UK news reports, GOSH attorneys doubled down on their position, telling the Court of Appeal that Charlie “cannot see, hear, make a noise or move,” that it is “hard for anyone to know whether he is pain,” and that further treatment would leave him in a “condition of existence.”

In essence, the hospital asserts the parents are unreasonable to pursue a treatment, cannot tell if they are causing Charlie pain and there’s no “meaningful” reason for Charlie to stay alive.

It is now five months since the funding campaign was started by Charlie’s parents, desperate to get him to the U.S. to be involved in experimental “nucleoside bypass therapy.” They acknowledged it was a move that had limited scientific basis to repair Charlie’s mitochondrial depletion syndrome, but would assuredly aid in the research to help others in the future.

It is hard not to see that Charlie Gard’s deteriorating condition is due in no small part to the stubbornness of a hospital unjustly asserting control, and “usurping the parental function” in the words of the parents’ attorney today in Court.

Followers of Charlie’s saga scratch their heads and say why has the hospital insisted –against the parents’ wishes—that Charlie be removed from life support and “die with dignity?”

The Court of Appeal will have the final word Thursday.

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Baby Charlie Gard: parents fight vs. life-support removal

Today, it was confirmed in the British press that the U.K. Court of Appeal will review on May 23, the case of Charlie Gard– a nine-months-old baby ordered off life support by the High Court last month.

Baby Charlie has been in a London hospital since October, when it was detected he had mitochondrial depletion syndrome, a rare and grave chromosomal condition that weakens his muscles. No successful cure is yet available, but he is eligible to receive an innovative treatment in the U.S. called nucleoside bypass therapy.

London’s Great Ormond Street Hospital, however, won’t allow Charlie’s parents, Connie Yates and Chris Gard, to remove him for the trip overseas– even after more than $1.5 million has been raised with a GoFundMe campaign, to cover medical expenses and travel.

The April 11 court decision by Justice Nicholas Francis backed the position of the hospital “bosses” (as the Brits term the hospital bureaucracy) that Charlie’s ventilator be shut off, and he be allowed to “die with dignity.”

But the modern definition of dignity is too often infected with subjective “quality of life” assessments and rationed care considerations.

The attorney for Charlie’s appeal is Charles Da Silva, and the granting of this appellate review reflects a legal analysis that the parents can possibly prevail.

Connie and Chris are desperate that their parental rights be upheld. They are not claiming the therapy will cure Charlie, but that it has shown some success and Charlie’s participation will aid the research. The parents have stated:

“If there is no improvement we will let him go. We just want to give him a chance. Charlie is still strong and stable. He is growing more beautiful by the day.”

The huge outpouring of support from the public is quite touching, including candlelight vigils, and letters storming Parliament as registered on social media at #charlie’s fight and www.charliesfight.org.

The public believes Charlie’s parents should be in charge of their son… will the Court of Appeal see it that way?

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Charlie Gard, who suffers from a rare, life-limiting chromosomal condition that weakens his muscles, will turn 9 months on Thursday, in the Great Ormond Street Hospital (GOSH) of London.

But the raging battle over treatment options–and whether the government hospital service has sole medical authority over those decisions–is far from over even though a High Court ruling last month defends death for Charlie.

His parents, Connie Yates and Chris Gard, are devastated that their decision-making rights over Charlie’s care have been crushed. They met today’s deadline to file a legal complaint to prevent Charlie from being taken off life-support. According to Britain’s The Sun, a new legal team has been hired and made the required application.

No time line for court acceptance of the appeal has been announced.

Chris and Connie have been constantly at Chris’s bedside at GOSH since October. They are currently being prevented from taking him to the United States for an innovative treatment called nucleoside bypass therapy. The treatment has not yet been published, according to Connie, but has shown success. It involves administering natural compounds to remedy the mitochondrial depletion syndrome Charlie suffers.

Many thousands of well-wishers on social media have encouraged his parents, and pledged over $1.3 million pounds (roughly $1.7 million dollars) to Charlie’s GoFundMe account to cover expenses for the overseas trip.

precious Charlie

Yet on April 11, the U.K. High Court ruled against the parents, holding that GOSH could keep Charlie, shut off his ventilator, and allow the baby to “die with dignity” on the grounds that the proposed U.S. treatment could not “cure” him.

FUTILITY JUDGMENTS
The idea that any court can deny parents the right to remove their son from a hospital seems absurd and unjustifiable. But it’s a logical outgrowth of the reality of rationed care— particularly in Britain with the National Health Service– coupled with changes in medical ethics.

It is sadly no longer the assumption that medical facilities feel bound to sustain a patient’s life. Instead, doctors can delegate treatment as not to be administered because it will

  • not cure the underlying disease; and /or
  • not produce an “acceptable” quality of life.

Such care is alternatively called “non-beneficial,” “medically inappropriate,” or “futile.” A new law in Kansas, Simon’s Law, requires hospitals to disclose any futility policies upon request.

When the medical elite deem that certain patients should be denied medical care, those who object are considered as throwing a “monkey wrench” in the system. Charlie’s parents’ attorney found an email from a doctor at GOSH who called the parents a ‘spanner in the works’ due to their exploration of all medical options available internationally.

GOSH asserts that further treatment would unnecessarily “prolong” Charlie’s suffering. In an interview on British ITV, Connie said:

“If there is no improvement we will let him go. We just want to give him a chance. Charlie is still strong and stable. He is growing more beautiful by the day.”

Appeal judges will be considering whether Charlie’s parents have a reasonable chance of success before allowing a full appeal hearing to be held. The Mail reported the couple’s new attorneys may be looking at using human rights laws to defend their case.

“Before he was hired, the couple’s new lawyer, Charles da Silva, wrote on his firm’s Facebook page that the High Court ruling highlights that not only doctors but judges can get it wrong too,” the Daily Mail reported.

The world’s parents are watching. Stay tuned.

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Charlie Gard with parents

Days after Kansas achieved a landmark law for parents’ decision-making authority governing hospitalized children, another baby and his parents are losing their fight with a London hospital to bring their ailing son to the U.S. for treatment.

On April 7, Kansas’ Gov. Sam Brownback signed “Simon’s Law,” to insure parents can reject hospital DNR (do not resuscitate) orders for their children. The law was instigated by the parents of Simon Crosier– an infant denied the right to live by a hospital DNR — based on bias against Simon’s life-limiting condition, Trisomy 18.

Simon Crosier

During consideration of the bill, and despite documented evidence to the contrary, there were plenty of denials that hospitals would ever overcall parents’ wishes on treatment to preserve life.

Yet consider this currently-unfolding tragic scenario as reported by the BBC and other UK media.

Connie Yates and Chris Gard’s eight-months-old son, Charlie, has been in Great Ormond Street Hospital (GOSH) hospital since October for treatment of a rare condition that causes progressive muscle weakness. Charlie is believed to be one of only 16 known babies ever to have had this mitochondrial-depletion disease.

As reported by the BBC April 3, there was “no evidence that he is in pain on a regular basis.”

Charlie’s parents have now raised over 1.3 million pounds through a “GoFund Me” campaign to be able to bring Charlie to the U.S. for pioneering treatment called nucleoside therapy.

Ms. Yates said, “the support and phenomenal kindness of countless people has been a source of strength.”

“We just want to have our chance. It would never be a cure but it could help him live. If it saves him, amazing. I want to save others. Even if Charlie doesn’t make it through this, I don’t ever want another mum and their child to go through this.”

But the London hospital won’t let them remove Charlie, concluding there is no “accepted cure.”

The parents took legal action but the High Court sided with the hospital on April 11. The BBC headline was dire, “Doctors can withdraw life support from a sick baby with a rare genetic condition against his parents’ wishes.”

The language used to officially overcall the rights of parents uses now-all-too-familiar terms.

  • The GOSH attorney argued that “world-renowned” experts agreed the child should not be given long-term life support as his “quality of life” is “so poor.”
  • UK doctors have insisted there is no “accepted cure” and Charlie should be allowed to “die with dignity.”
  • The attorney appointed to represent Charlie, said proposed treatment in the U.S. was “purely experimental” and continuing his life support would only “prolong the process of dying”.

Justice Francis

High Court Justice Nicholas Francis of the Family division made the fateful ruling that Charlie be moved from life-support to a palliative care regime and be allowed to “die with dignity.” And even after Justice Francis admitted that experimentation might benefit medical science, he asserted it could not “benefit” Charlie.

Justice Francis had seen Charlie at GOSH, and said it has been his “sad duty” to apply the law relating to disagreements between parents and hospitals. He expressed his “complete conviction” that it was in the “best interests” of the child to let him “slip away.”

But this was no mere settlement about what GOSH could or should provide.

This is an imprimatur on whether a child with a life-limiting condition, once admitted to a hospital, can leave!

On Tuesday, April 25, in the House of Commons, MP Ruth Cadbury spoke up for the plight of her constituents, Charlie’s parents. She urged the justice secretary to use “any powers to intervene…to do the right thing.”

MP Cadbury

The plea was immediately rejected.

Charlie’s parents, Chris and Connie, “are devastated” by the decision, and have until Tuesday, May 2, to file an appeal, said their attorney, Laura Hobey-Hamsher.  “They are struggling to understand why the court has not at least given Charlie the chance of treatment in America.”

The neurologist who would oversee the experimental treatment had testified to the court that while Charlie was in the “terminal stage” of his illness, treating him would be compassionate.

That notwithstanding, the hospital refuses to discharge Charlie and the High Court has decreed Charlie move to “a palliative regime.”

Tragically, British hospitals and government have ruled that Charlie Gard must die.

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