Thursday, July 6, 2017

Charlie Gard 3

A beautiful boy born 11 months ago is dying in London. The world watches as his parents battle to keep their child alive. Courts will not allow the hospital to release the baby, Charlie Gard, into the parents' custody so they can travel to try an experimental treatment.

Across the ocean, many people are appalled or confused, and wondering: Could a similar situation happen in the United States?

"It's an absolutely horrific situation," said Claire Fenton-Glynn, a legal scholar at the University of Cambridge.

Yet according to some medical ethicists, similar cases happen all the time.

“The parents' advocate was saying the parents' choice should be respected unless you can show that their choice would cause the child significant harm," she said. That argument -- despite its appeal to many Americans -- fell on deaf ears in the UK, where Charlie's best interests remained the solo concern.

The judges concluded that the experimental treatment would be "futile," Fenton-Glynn said. "There's no evidence that it would provide benefit to the child."…

Although a Charlie Gard case could happen in the United States, "it seems unlikely," said Dr. John D. Lantos, director of pediatric bioethics at the University of Missouri-Kansas City School of Medicine. Similar cases in the US, such as Jahi McMath's, tend to be resolved in favor of parental rights, he explained…

"All the doctors agreed that (Jahi) met the criteria for being brain-dead," Lantos said. "The courts said, 'Yeah, we respect the doctors' opinion, but if the parents want to pay for her treatment and take her to a different place, we'll let 'em.' And they did. And she is still alive."…

American courts "don't usually do the opposite and say that 'parents who want to keep their child alive are making a decision contrary to the child's interests, because the child would be better off dead, so we're going to overrule the parents,' " he said. "Even when a child met the criteria for brain death," the courts allowed the parents to seek care, he added.

One famous exception is the case of Terri Schiavo, a woman who suffered cardiac arrest resulting in brain damage in 1990. The US Supreme Court upheld her husband's decision to withdraw life support, despite her parents' objections. She died in 2005 at age 41.

Still, a key aspect of the Charlie Gard case is that there is no question of the parents "being loving, devoted, attentive, caring people," Lantos said.

Sometimes, parents are not visiting their child frequently, are on drugs or are simply not showing themselves to be devoted, caring parents, Lantos said, "but in (the Charlie Gard) case, the judge went out of his way to praise the parents for their commitment and attentiveness."

What most Americans found unusual "and perhaps radical about (the Charlie Gard) decision was, the family wasn't asking the hospital to continue treatment or the National Health Service to pay for it. They said, 'We have the money. We have a doctor in the US who's willing to do it. Just let us go,' " Lantos said. "And the courts essentially said, 'Nope, we're not even going to let you go.' "

English law, explained Fenton-Glynn, does not see parents as having the "right" to make decisions on behalf of their children. "The concept is called parental responsibility: That is, the parent has a responsibility to make decisions, to look after the child," she said. "Parenthood doesn't give them rights; parenthood gives them responsibilities."

Seema Shah, a lawyer and ethicist who is a faculty member at the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Research Institute, explained that US courts consider "parental discretion," not parental responsibility.

American parents have "discretion to make decisions" on behalf of their children, Shah said, "up to the point where their decisions are going to cause harm to their children."

Many Americans see it as their "right," she said. Legally, though, US courts are following the same best-interest standard as the UK, but the way it works here, at least in practice, is that "courts are deferring to parents," Shah said.

American courts recognize that parents have values and that parents understand their children, even if this does not give parents rights to do whatever they want, Shah explained.

Still, from state to state, "there's a lot of variability in practice," she said. It's not so much a matter of differences in state laws, it's more a matter of "different parents make different decisions, and courts and hospitals accommodate those more or less in different states," she said.

So, although some children in the US are born with inherited diseases, just like Charlie, their lives look very different from his, Shah said. In America, these babies "receive care from hospitals willing to accommodate parents who want their children to live as long as possible -- with their suffering minimized, of course," she said.

"Wrenching" is how Shah describes Charlie's case. A lot of detail has not been made public, such as "the pain doctors expect that Charlie's in," she said. "He's likely sedated to the point where he's not feeling a lot of pain. Still, the procedures he's undergoing may be painful and unpleasant." Shah also believes the judge "might be worried about people taking advantage of desperate parents. The judge clearly struggled with this case."

"When you look at these cases, what's so hard is, we have to ask ourselves, 'Should we let parents spend a lot of money to take a shot in the dark when the alternative is they will lose their child?' And I don't think there's an easy answer to that question," Shah said.

She noted that bioethics and legal principles collide when slow-moving courts must decide cases like Charlie's. Meanwhile, "the child deteriorates," she said. Lacking better processes to resolve disagreements, it's "delay that makes the decision."

"Therapeutic misperception" is at play in the Charlie Gard case, said Dr. Jeffrey P. Brosco, a professor of clinical pediatrics at the University of Miami Miller School of Medicine. He's seen this in other bioethical cases and believes cases that closely resemble Charlie's happen stateside all the time.

"Therapeutic misperception is the idea that if there's something that could work, then it probably does work, and 'Yes, I want to be involved with it, and I'm willing to take any chance,' " said Brosco. "That seems to be happening here. It certainly was portrayed that way by the courts. You ask a parent, 'Do you want to take a one in a zillion chance?' Most families would say 'Yes.' "

Though Brosco does not know every detail, he believes from all that he has read that Charlie's situation is one in which "no more good medical options exist. Where the only thing the medical team is doing, at this point, is causing more pain and suffering," he worried.

"Whether it's here, England or Europe, judges have to make these decisions sometimes," Brosco said. To head off these situations in South Florida, he said, five hospital ethics committees have joined forces to form a single opinion, presenting a united front whenever a difficult decision must be made.
"It's the whole community of providers that agrees there's only one right thing to do," Brosco said…

"Physicians don't have an obligation to offer or to provide medical interventions that are not deemed to be medically inappropriate," McGuire [Amy McGuire, director of the Center for Medical Ethics and Health Policy at the Baylor College of Medicine]said, yet "all the time," people request inappropriate services of doctors.

"For example, does a pediatrician have an obligation to give a baby or a child antibiotics when they're fairly certain that the baby or child has a virus and not a bacterial infection, because the parents are saying, 'I want an antibiotic; my kid is sick'?" McGuire asked. "If you provide medical services that are not medically indicated, there could be legal ramifications for that as well."

The Texas Advance Directives Act amounts to a lot of hoops to jump through, Lantos said, but "even in Texas, if the parents found a hospital that would take a baby like Charlie Gard," the child would probably be transferred.

"Our job as clinical ethicists is to try to help resolve those conflicts before it gets to the point of being so adversarial that nobody can make a decision and the courts have to get involved," McGuire said. To prevent gridlock, clinical ethicists negotiate and identify goals of care and try to "come up with some sort of mediated solution that everybody can feel good about."

These "incredibly difficult situations" are "best dealt with between family members and health care providers," McGuire said. "We don't want to encourage the politicizing of medical decision-making. I think that would be a very bad direction to go."


  1. A New York hospital has offered to help Charlie Gard, the 11-month-old baby from the U.K. suffering from a terminal illness.

    New York Presbyterian Hospital and Columbia University Irving Medical Center said it would admit the infant and evaluate him as long as "legal hurdles" could be cleared, CBS reports.

    "New-York Presbyterian Hospital and Columbia University Irving Medical Center have agreed to 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" the hospital said in a statement Thursday.

    New York Presbyterian also said, as another option, it would ship the experimental drug to London's Great Ormond Street Hospital, where Charlie is currently receiving care, if the FDA approves. The hospital said it would advise medical staff at Great Ormond on administering the treatment to the baby "if they are willing to do so."

  2. As Charlie Gard's parents fight for an experimental treatment to try to save their terminally ill infant, the 11-month-old boy's mother vowed that the family will not let him suffer.

    Connie Yates made the promise Friday after the hospitals in Rome and New York offered to evaluate the British baby at the center of an international life-support controversy that has drawn sympathy and support from Pope Francis and President Trump. Charlie has a rare genetic condition and resulting brain damage that has robbed him of the ability to see, hear, move or breathe on his own, and doctors in Britain have concluded that nothing more can be done for him.

    But Yates said Friday morning on “Good Morning Britain” that doctors have told her there is about a 10 percent chance the experimental therapy could work for Charlie.

    “So I think that's a good enough chance to take,” she said. “In some sense, people may say that's a small chance; but when it comes to medicine, that's quite a big chance. Because sometimes you'll do chemotherapy and there's only a 2 percent chance of it working but you still try, because everybody wants to live, you know? The majority of them.”

    Yates said she and Charlie's father, Chris Gard, are committed to their son's well-being.

    “We are not bad parents, we are there for him all the time, we are completely devoted to him and he's not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn't do it,” she said on “Good Morning Britain.”

    New York-Presbyterian Hospital and 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.

    The U.S. hospital said another option could be to ship an experimental drug to London's Great Ormond Street Hospital, where Charlie is currently being treated. The American hospital said it would provide instructions on administering the drug, provided the FDA gives clearance.

    Bambino Gesù Children’s Hospital President Mariella Enoc said doctors who study rare diseases at the Vatican hospital were in contact with international experts, including in the United States, “to develop a protocol for experimental treatment for Charlie.”

    The pope said last week on Twitter that “to defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”

    Tension mounted late last week after Charlie's parents appeared in a tearful video statement, saying doctors were planning to remove Charlie from life support June 30 at the London children's hospital.

    The family said the hospital decided to postpone the termination of care.

    “Charlie was going to die and … we were absolutely devastated,” Yates said Friday on “Good Morning Britain,” according to BBC News. “We had no control over it, the way it was done.”

    When the White House “got involved,” she said, “that changed things.”

    [I have long suspected that Charlie's "suffering" is a reflection of how certain onlookers feel about him, rather than intrinsic to Charlie.]

  3. Social media users moved by the tragic case of Charlie Gard should stop attacking doctors and instead read the court judgments setting out the facts of his illness, a paediatrician has said.

    Dr Ranj Singh, an NHS doctor, appears regularly on This Morning and is the creator of the children’s programme Get Well Soon.

    He told The Independent the care of medical staff at Great Ormond Street Hospital (GOSH) was “the reason [Charlie] is alive” and that “there’s no reason for them to wish ill intent towards” any patient.

    The case of Charlie Gard isn’t as black and white as it seems
    Charlie, aged just 11 months, has a rare genetic condition that means he has brain damage and his muscles are not developing. At least one doctor believes he is “likely” to be suffering, potentially at a “significant” level.

    Successive courts have ruled his life support should be switched off due to the degenerative nature of his illness.

    Dr Singh told The Independent: “These are not judgments that have been taken lightly, or reached easily. Their job is to provide an objective assessment and decision on complicated areas like this, when mutually agreeable decisions can’t be reached.

    “People need to go to the court transcripts and have a look at what the arguments are. This is a highly emotive case.

    “It will naturally get people’s emotions and opinions up, and many people will take to social media to get their information and express themselves. Unfortunately that means it’s jumping on a bandwagon.

    “People have formed opinions already. There’s a huge distrust of the medical profession around cases like this...

    “That’s sad, because what you’ve got to think about is the teams that are looking after this extremely unwell child, they do this day-in, day-out. The reason these patients are alive in the first place is because of the 24-hour care that these people provide...

    Charlie’s mother, Connie Yates, said she believed her son was not “suffering” or in pain, and that Mr Trump’s intervention had given her renewed hope.

    She told Good Morning Britain: “We are not bad parents, we are there for him all the time, we are completely devoted to him and he's not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn't do it.”...

    The Court of Appeal ruled in May: “It must follow from that unanimous professional and expert evidence, that to move Charlie to America and expose him to treatment over there would be likely to expose him to continued pain, suffering and distress.”

  4. The family of terminally-ill baby Charlie Gard say "the fight is not over" as his case for new treatment prepares to go back to the High Court.

    On Saturday his family posted a defiant tweet to their supporters saying: "The fight is not over."

    It comes as Great Ormond Street Hospital returns to the High Court on Monday for a fresh hearing "in light of claims of new evidence relating to potential treatment for his condition".

    A GOSH spokesman said "we believe, in common with Charlie's parents, it is right to explore this evidence".

    Charlie inherited the faulty RRM2B gene from his parents Connie Yates and Chris Gard, affecting the cells responsible for energy production and respiration and leaving him unable to move or breathe without a ventilator.

    The couple, both in their 30s and from Bedfont, west London, want to take him to a hospital in the US but lost a lengthy legal battle after judges ruled in favour of doctors at GOSH, who argued the treatment would not improve the 11-month-old's quality of life.

    GOSH has applied for the case to go back to court after two international hospitals and their researchers contacted them "as late as the last 24 hours" to say they have "fresh evidence about their proposed experimental treatment".

    Under a High Court ruling, GOSH is forbidden from allowing Charlie to be transferred for nucleoside therapy anywhere.

    It comes as US President Donald Trump and the Vatican waded into the dispute.

    Researchers at the Vatican children's hospital implored Charlie's doctors to reconsider allowing an experimental treatment to be used, citing "new information".

  5. My main argument was that the decision of the physicians caring for Charlie, and of the courts which sustained their decision, was one which aimed at Charlie’s death by omission. It seems clear, for instance, that if Charlie were to continue breathing after the court-ordered removal of his ventilator the aim of these deciders would be frustrated. The object of their act, therefore, is the very definition of euthanasia according to Catholic teaching: An omission which by intention causes death.

    Ivereigh’s critique was scathing. Because the physicians and judges were acting in “the best interests of the patients” he claimed that it is “grotesquely insulting” to argue, as I did, that they would be displeased if Charlie continued to breathe on his own after ventilation removal.

    But I’m honestly perplexed as to why Ivereigh has this view. What in the current trajectory of secular bioethical thought leads him to conclude that there is something incompatible with well-meaning people acting in the best interests of a mentally disabled person and also aiming at their death?...

    In the High Court, Mr. Justice Francis repeatedly stated, with approval, that “Charlie’s parents accept that his present quality of life is one that is not worth sustaining.” Francis also cited one doctor as saying that the severity of Charlie’s condition was such that “it could be argued that Charlie would derive no benefit from continued life.”

    So let’s be clear. The “quality of life” and “benefit from continued life” judgments being made have little or nothing to do with the burden of Charlie’s artificial ventilation. The mild discomfort of such treatment, if Charlie can feel it at all, can be mitigated by various therapies, including deep sedation.

    No, if Charlie started breathing again after ventilation was removed, Justice Francis would not be pleased with the outcome. He, along with many others, have explicitly made the judgment that Charlie’s life overall is not worth living. They have made the judgment that it is time for Charlie to die in his own best interests, and the means by which they will accomplish this is by removing Charlie’s life support. We ought to call this what it is: Euthanasia...(continued)

  6. (continued)I reserve the right to change my mind, but at this point I cannot understand how the benefits of what ventilation brings (Charlie’s very life) could possibly be proportionate with the mild burdens created by the treatment - which, again, can be mitigated by therapy.

    Indeed, the only way such burdens could be proportionate appear to involve one of two judgments: (1) The huge expense of the treatment makes it extraordinary or (2) “Charlie’s very life” is not worth that much after all. The judgment present in (1), as I argued at length in my book on the topic, could be consistent with Catholic teaching. Indeed, Charlie’s parents should take into consideration just distribution of resources when it comes to a decision to spend nearly two million dollars of health care on a single person.

    But the judgment present in (2), it should be clear, cannot be consistent with Catholic teaching. The lives of all human persons, no matter how profoundly disabled, are equal in moral worth. Indeed, the Catholic requirement to have a preferential option for the most vulnerable means being particularly critical of the judgment of privileged persons that someone who cannot speak for themselves has a life that is of little or no worth...

    The move many of those arguing for infanticide are making is quite simple. “Look, we are already aiming at the death of babies by omission,” they say. “Even religious people have no problem with this. What’s the difference between aiming at death by omission and aiming at death directly?”

    Nothing. Both Catholic moral theologians and those arguing for infanticide in the JME symposium agree about this...

    We should take great care never to endorse an omission that aims at the death of an innocent person, period, full stop. But in a bioethical age of creeping infanticide, we should be even more careful than usual to safeguard this principle. The equal moral value of the voiceless and vulnerable depends on it.

  7. “And there’s nothing more real than the power of a story where there’s sort of a utilitarian authority saying, 'This life is not worth saving, and I’m not even going to let the parents get involved and try to save the life.’”.

    Dannenfelser pointed to the importance of media coverage in regards to American healthcare.

    “The authority of an entity of the medical authorities to determine life and death versus a parent that wants to take care of their child,” she outlined the “juxtaposition. “Those are mutually exclusive claims that are in conversation right now. Complete coverage of that is vital because it will determine in many ways how we design our own health care system.”...

    Like Dannenfelser, Mancini also pointed to healthcare.

    “The wish of the family is to keep trying, and so for the state to impose their will over the family when it’s not even an issue of money, is just heartbreaking,” she added. “And it’s really, frankly, scary about where our health system is going to.”...

    Young Nance recognized the case as “precedent setting.”

    “Usually if the state exerts its authority, it’s because the parents aren’t doing enough,” she stressed. “It’s not this kind of situation where parents have the resources, are thoughtful, loving parents, who have very thoughtfully and prayerfully decided what they think is the best step for their child.”...

    “Parents should have the right to make the decision the kind of care that their baby should receive,” she said. “It is not the state or the hospital who should make the decision between a life and death for this child.”

  8. The parents of 11-month-old Charlie Gard were joined by an 'army of supporters' to deliver a 350,000 signature petition to Great Ormond Street hospital calling for him to go to the US for treatment.

    Chris Gard and Connie Yates said they were 'overwhelmed' by the worldwide support they have had in their battle, with the latest leaders to offer their support including Donald Trump and the Pope.

    Today they publicly blasted the court decision to stop them from taking their baby to America for treatment at a protest outside the hospital in London because, they said, Charlie 'deserves a chance'.

    In an emotional speech in front of banners supporting the terminally ill baby at Great Ormond Street Hospital this afternoon, Chris Gard noted that in the seven months his son has been on a ventilator while suffering from his rare genetic condition, he could have had the proposed treatment from American doctors twice over.

    Mr Gard said: 'We just want to thank you all for being here.

    'Over 350,000 people have signed the petition. Our special thanks go to, obviously America, and everyone in Rome, who are supporting us and believe that Charlie deserves this treatment, as he rightly does, as we believe.'

    The pair also thanked the British public and the media for their help in the campaign.

    Mr Gard said: 'We are trying to take out son from one hospital, where they, you know, there are a lot of specialities there, and it's a fantastic hospital, they do great things there.

    'Unfortunately, they are not specialists in Charlie's condition - the specialists are in America, where we want to go.'

    Miss Yates added: 'There's now seven doctors supporting us, from all over the world, from Italy, from America, from England as well, that think that this has a chance, you know, (an) up to ten per cent chance of working for Charlie - and we feel that that's a chance worth taking.

    'We've been fighting for his medication since November, we're now in July.

    'He's our son, he's our flesh and blood - we feel that it should be our right as parents to decide to give him a chance at life, for a medication that's just oral medicine, no known major side effects...

    The Sun reported the family had spoken to the father of Ashya King, a young cancer patient whose parents took him out of hospital and abroad for proton beam therapy not offered on the NHS.

    Brett King, 54, accused GOSH doctors of making a 'boardroom decision' on Charlie's case and told the paper: 'There's no logic in refusing them.'

    And on Saturday, a message on the Charlie's fight Twitter page said Rev. Mahoney was 'outraged' when he was initially denied access.

    He said: 'It is an outrage that Great Ormond Street Hospital has denied a pastor from praying for Charlie Gard and offering spiritual help to his family.

    'I was invited by Charlie's parents Connie and Chris to come from America to pray for Charlie, and it is stunning that I was denied from doing this.'

  9. Charlie Gard is eleven months old. He has a rare brain disease.

    There is a chance that his life could be saved -- at a hospital in America -- a hospital that could provide an experimental treatment.

    Charlie's mom and dad raised hundreds of thousands of dollars for the journey.

    But the British courts said no -- a judge ruled that doctors could take the little boy off life support without parental consent. The doctors say there is no hope - Charlie cannot breathe on his own - and he has brain damage. And they say the boy's parents have no right to determine his fate.

    Charlie's mom and dad are devastated.

    The European Court of Human Rights declined to hear the case -- in essence handing down a death sentence. It's ironic that a court that oversees Human Rights - does not believe Charlie Gard has a human right to live.

    They do not believe that Charlie's mom and dad have a right to decide what is best for their child. The court believes the responsibility rests with the doctors in white coats. And the doctors believe that it would be in Charlie's best interest if he simply died.

    The pope has tried to intervene -- so has President Trump -- urging the British government to have mercy. But so far -- their pleadings have fallen on deaf ears.

    So as it now stands - Charlie Gard could very well be dead before his first birthday - sentenced to death by the British government -- because doctor's believe that's what's best.

  10. Charlie Gard is an innocent 11-month-old who was born with a rare genetic disease that is costly to treat. Because of that, he will now be allowed to die.

    Although he lives in the U.K., Charlie’s case is not irrelevant to Americans. While frustrating and difficult, this is the reality of big government and socialized medicine. When the government becomes the ultimate decision maker, the rights of the individual are secondary. Our Founders believed that rights are endowed by God and can, therefore, only be taken away by God or by individual forfeiture. They knew that everything given by the government could also be taken by the government and, thus, designed a Constitution and system of government to protect the individual from the state.

    American medicine and technology is among the most cutting edge in the world, but a socialized, single-payer health care structure, like that in the U.K., is not driven by research and cure, but profit. In 1999, the Brits established the National Institute for Health and Care Excellence (NICE). According to their website, NICE is, “a special health authority, to reduce variation in the availability and quality of NHS treatments and care.” Basically, NICE unilaterally decides what treatments are profitable and which ones are, in their view, a waste of government money...

    In the U.S., we do have the relative freedom to pursue alternative treatments and research cures. However, a small, yet controversial provision of ObamaCare, called the Independent Payment Advisory Board (IPAB), is moving us further away from a free market based health care system and is shoving us in the direction of a single-payer system.

  11. Eleven-month-old Charlie Gard is desperately ill with a rare genetic disorder. He can’t breathe or move on his own. He’s blind and deaf. He suffers from epileptic seizures. Doctors in London say his illness can’t be treated effectively and that he likely will die soon after life-support is withdrawn.

    Charlie’s parents, Connie Yates and Chris Gard, are fighting to bring their son to the U.S. for experimental treatment. They’ve raised $1.7 million on a crowdfunding website to do so.

    But Charlie’s doctors, and the British courts, won’t let him go. Medical authorities argue that prolonging his life by keeping him on a ventilator could cause him pain. British authorities won’t even let the parents take him home to die.

    Why does the British government have such wide authority over Charlie’s treatment? One big reason: Because the government funds a single-payer health system, picking up medical costs for British citizens.

    This medical drama, no matter anyone’s opinion, foreshadows the difficult decisions to come if America converts its medical insurance system into a single-payer model. (Note that “single-payer” is a euphemism for government-controlled health spending and care.)

    Single-payer advocates say such a system would be more cost-efficient. To the extent that’s true, it’s partly because single-payer systems often deny expensive, experimental treatments and drugs, forcing patients to pay out of pocket. Or patients can’t get those pricey, modern treatments.

    Bottom line: Single-payer is no panacea. Free treatment isn’t free. Somebody – everybody – pays.

  12. The father of terminally ill baby Charlie Gard interrupted the U.K.'s High Court of Justice today with an outburst directed at a lawyer representing the hospital that’s treating his son.

    "When are you going to start telling the truth?" Chris Gard yelled at the attorney.

    The disease has caused damage to the boy's brain and rendered him unable to breathe without assistance, according to Great Ormond Street Hospital, but Charlie's parents have downplayed the extent of the damage.

    Gard and Connie Yates -- the 11-month-old boy’s parents -- attended the High Court hearing today hoping for a decision that was expected to determine the infant’s immediate fate, but the couple was forced to wait until Thursday.

    Judge Nicholas Francis gave the couple until Wednesday afternoon to present new evidence demonstrating that their child should receive the experimental treatment that the couple says could potentially improve his condition.

    “There is not a person alive who would not want to save Charlie,” Francis said...

    Flanked by supporters of their cause, they delivered a petition signed by more than 350,000 supporters urging officials to allow their son to be taken to the United States.

    "There are now seven doctors supporting us from all over the world -- from Italy, from America, from England as well -- and they think that [experimental treatment] has a chance, you know, up to 10 percent chance of working for Charlie, and we feel that that's a chance worth taking," Yates said Sunday, adding that they have been fighting for this opportunity since their son arrived at the hospital.

    Gard said his son "should have had [experimental treatment] a long time ago" and thanked the supporters who signed the petition for their support.

    Gard said at the hospital Sunday that there is "no evidence of catastrophic brain damage" in his son, and that the experimental treatment they are seeking can "get into the brain and help" with what harm has occurred.

    Great Ormond Street Hospital had said in a statement Friday that while it is seeking the High Court's opinion about experimental treatment for Charlie, the concern is that it will be ineffective and ultimately prolong his condition.

    "Our doctors have explored every medical treatment, including experimental nucleoside therapies. Independent medical experts agreed with our clinical team that this treatment would be unjustified," the hospital said.

    "Not only that, but they said it would be futile and would prolong Charlie’s suffering. This is not an issue about money or resources, but absolutely about what is right for Charlie," it added.

    The hospital said in June that it did apply for ethical permission to attempt nucleoside therapy on baby Charlie but, by the time that decision was made, the infant’s condition had worsened. “The view was that his epileptic encephalopathy was such that his brain damage was severe and irreversible that treatment was potentially painful but incapable of achieving anything positive for him,” the hospital said in a statement.

  13. A judge at London's High Court ruled against the hospital and in favor of the parents of baby Charlie Gard--who is suffering from a rare genetic disorder--that they may present new scientific evidence concerning their son's treatment, which will be reviewed this Thursday and could possibly lead to Charlie receiving treatment in the United States. But the outcome is still uncertain and Charlie's fate is precarious...

    Under the health care laws in Britain, however, the parents are not allowed to pursue this option. The hospital contends Charlie is brain-damaged and beyond medical hope, and the hospital wants to shut off his life support. This denial of the parent's desire to seek treatment for their son elsewhere led to several court rulings -- in favor of the hospital. On Monday, July 10, the judge who previously ruled against the Gards agreed to review whatever new evience they can present to him for a reevaluation.

    As reported by the BBC, "Signatories to the new letter include a neurologist and a research fellow from Rome Children's Hospital, a scientist from Cambridge University's Mitochondrial Biology Unit and two researchers from Vall d'Hebron Institut de Recerca in Barcelona."...

    Foster told that Charlie Gard's parents prefer that their son go to the United States for treatment. "We’re talking about world-class hospitals, first in the field, and that is what they prefer," she said. "And they’re asking that Charlie be treated in the way that they think is best but also in the way that many doctors and hospitals [think] is best.”

    If there is a ruling in favor of the parents, baby Charlie could be treated at several different facilities in the United Sattes, including New York Presbyterian Hospital and the Columbia University Medical Center. The hospital at the Vatican has also offered to take Charlie in for treatment. The procedure is fairly simple as the medicine is put into milk and the baby drinks it...

    On its website, the AUL states, "I am Charlie. We all are Charlie. He could be my child, or your child, or any one of us, as we age or get sick or injured. The life and death struggle facing Charlie’s parents is more common than you think, which is why we are fighting for the parents’ right to determine their own son’s welfare, to give Charlie a chance at life."

    In a joint statement issued with the Susan B. Anthony List, Concerned Women for America, March for Life, and Students for Life of America, the AUL said, “The idea that a government may override and block parents’ decisions about the care for a child is horrifying. In past situations of similar circumstances, the patient or their family has always had the option of finding alternative care and that’s exactly what Charlie’s parents have done. This is their child and they want to use money they have raised from private donors around the world to provide him access to a treatment option that has had some success with a related condition.

    "It is chilling that the UK court is allowing the London hospital to deny the family this option, or even the option to bring Charlie to spend his last hours at home. Our two nations have a proud and enduring history of protecting individual rights and respecting home and family. We strongly support the offer of our government to assist Charlie and his parents in this exercise of their natural rights.”

  14. Charlie Gard’s parents are doing the wrong thing — and I’d probably do it too. Charlie Gard, if you haven’t heard, is the 11-month-old baby whose plight has become a popular cause in England and, increasingly, the United States…

    Charlie’s doctor’s at Great Ormond Street Hospital told his parents there was nothing to do other than to make Charlie as comfortable as possible before he dies.

    His parents saw it differently. A doctor in the United States reached out and suggested a treatment called nucleoside therapy. To call this treatment unproven and experimental is a bit of an understatement. There haven't even been trials in mice, according to the BBC.

    Still, the hospital was open to the idea before Charlie’s condition deteriorated and he began to suffer from extreme seizures, caused by a brain disorder called epileptic encephalopathy. The doctors decided that the experimental therapy wouldn’t be therapeutic, never mind curative. It would only stretch out the infant’s suffering and the parents’ agony.

    Legal battles ensued. Crowd-funding efforts were launched. Petitions signed. Tabloids unleashed their fury, sometimes cruelly hyping the likelihood of a cure. The case went all the way up the ranks of the British legal system and then, on final appeal, to the European Court of Human Rights, which on June 27 refused to overrule the hospital

    But on July 3, Pope Francis and President Trump expressed support for the parents. On Monday, the British High Court reopened the case “in light of claims of new evidence” that there are possible treatments abroad.

    From everything I’ve read and the doctors I’ve talked to, that sounds extremely unlikely. The theoretical window for nucleoside therapy to have helped has almost certainly closed. Charlie is brain damaged on a cellular level. He can’t breathe without a ventilator. The doctors and courts believe it would be best for Charlie to pass as peacefully and as comfortably as possible.

    Still the parents are undaunted. As father Chris Gard said, “There is nothing to lose, he deserves a chance.” As a parent, never mind someone who had to take his own brother off a respirator, I have nothing but sympathy for Connie and Chris. But it’s not quite true that they have nothing to lose. The agony of dragging this out is a real price, not just in terms of time and money, but emotionally. Charlie’s parents are convinced their baby feels no pain. The doctors are not.

    If I were counseling them, I would suggest it’s time. But if I were their doctor or one of the judges presiding over the case, I would let them take their baby for treatment.

    Some of my friends on the right, for understandable and laudable reasons, want to make this case all about the right to life, euthanasia and various appeals to hope or faith.

    I see it far more as a matter of due process. In every liberal democratic country dedicated to the rule of law, the state has to jump through hoops to deny citizens of their rights. Even when the state knows a criminal is guilty, it still must go through the motions and prove its case.

    Charlie’s parents aren’t criminals, they’re distraught parents. And parents have rights. They aren’t absolute rights. Parents can’t kill their children or let them die through inaction.

    But the state can.

    Societies depend on the principle that parents are their children’s best guardians. It’s appalling for the state — particularly one that runs the healthcare system — to claim that it, not the loving parents, have the final say.

  15. Charlie Gard's parents "have every right" to fight for experimental treatment for their terminally ill son, activist Bobby Schindler says.

    Mr Schindler told Sky News the court battle was "very similar" to the case of his sister Terri Schiavo, who had a heart attack and was left in a vegetative state due to a lack of oxygen to the brain.

    While Mr Schindler's family fought to keep her alive, Terri's husband argued she would not want to stay alive with little prospect of recovery.

    Following a landmark 15-year US court case, Mrs Schiavo's feeding tube was removed and she died.

    Describing Charlie Gard's case as a "parental rights situation", Mr Schindler said he and other campaigners would "fight…as much as we can".

    He said: "If parents have the chance, hope and means to provide treatment they think could help their son they should have every right.

    "It doesn't make sense, reasonable people look at the case and see what's happening. Everybody is sitting back and asking why the hospital and courts are taking this decision.

    "Why are they imposing their values when they have parents that are more than willing to care for their son?"

    Mr Schindler added that the court battle had made headlines across the globe as "it frightens people".

    He said: "We are seeing more and more that our medical rights are being eroded.

    "I think people are frightened with families not being able to make these decisions.

    "It doesn't make sense and that's why we're here to support the family emotionally and let them know millions are supporting them, don't give up."

    Medical ethics expert Jonathan Montgomery told Sky News it would "take a lot" to overturn the High Court's initial decision against care in the US.

    Professor Montgomery said: "If there is a different balance of interpretation the judge is very unlikely to reopen the case.

    "But if there is information that he hadn't had the chance to consider previously he'll look at that."

    He added: "The suggestion there may be up to 10% of radical improvement seems a very difficult suggestion to make when so few children have similar diseases.

    "None who have the same condition as Charlie have had this treatment."


  16. Relations between Charlie Gard’s parents and Great Ormond Street deteriorated to such an extent that attempts were made to move the baby - but no other hospital would have him.

    A lawyer said discussions had taken place with other units to care for Charlie but ‘unsurprisingly’ none wanted him. A High Court hearing on Thursday will decide Charlie’s fate.

    A judge on Monday gave his parents Chris Gard and Connie Yates, from Bedfont in west London, until 2pm on Wednesday to produce fresh evidence that experimental therapy will improve the quality of his life.

    A source close to the family said they were distraught they had been given less than 48 hours to gather the material.

    “They feel they are being stitched up,” said the source, “they don’t believe it is enough time to get the fresh information together.”

    If Mr Justice Francis cannot be persuaded, he will order that the ventilator keeping the 11-month-old alive be switched off at a hearing due to take place on Thursday.

    It is not clear whether the parents - should they lose the case - will be allowed to appeal the decision. Previous hearings in the Court of Appeal, the Supreme Court and the European court have gone against the couple.

    In the hearing on Monday, the lawyer for Great Ormond Street Hospital (GOSH) said that Charlie’s parents had requested he be moved. “Charlie’s parents were no longer wanting him to be treated [at GOSH],” said Katie Gollop QC, representing the hospital. She added: “The hospital has tried to do what it can to find a place of treatment acceptable to the parents...

    “Not surprisingly no other hospital was prepared to take Charlie’s case.”

    In the hearing, Mr Gard, 32, attempted to interrupt Ms Gollop, who told the court: “That is Mr Gard asking why then did you refer us to Harley Street?”

    It is not clear when attempts were made to transfer Charlie, nor which clinic in Harley Street in central London, he was referring to. The hospital would not discuss the matter further while sources close to the family were unable to explain what was meant.

    Relations between the parents and the hospital remain fraught.

  17. Because this isn't merely some story about science or a story about dreams of a miracle. There won't likely be a miracle. Little Charlie suffers from a rare genetic illness. Blind and deaf, he endures painful epileptic seizures. His doctors in London insist that his illness can't be treated, and that he will die when life-support is withdrawn. And health care bureaucrats in London want it withdrawn.

    But his parents, Chris Gard and Connie Yates, are fighting to bring him to the U.S. for a chance at experimental medicine. They've raised almost $2 million.

    Yet British doctors say prolonging Charlie's life will only cause him pain. They won't even allow the parents to take their son home to die in their arms, at home.

    Think of that. The bureaucrats won't even let the child leave government care, where they've already decided, coldly, rationally, the way bureaucracies decide things, that they will end it.

    So the Charlie Gard story is a political story, where a government and its bureaucrats, not the parents, decide whether a baby lives or dies.

    Some governments might be seen as progressive, others as conservative, but to the people who pull the levers, one thing is understood.

    Government is about force. It always has been about force.

    They might be driven by what some call scientific reason, and by others as the end product of cost-benefit analytics. But with a bureaucracy, it always ends up being about the same thing.


    And so what this story has been missing — putting political proponents of single-payer government health care on the spot — is perhaps even more important than ever.

    Someday it might be your child whose fate is being decided by others. Someday it might be you.

    This is an extremely difficult case. And, are there times when human beings should let go, or be allowed to let go, in the hopes of finding a final release from pain and suffering? Of course.

    There are limits to medicine and to life span.

    But who should make that decision? The government or the parents?

    How far would you go to save your child's life? Would you jump into a wild river in the hopes of grabbing her hand? Would you put your body between him and bullets if you could?

    Or would you sit quietly, and allow bureaucrats to tell you what must be done?

    So you might want to think of Charlie Gard, and what's not being asked, what's not being said, and why.

  18. – Myth 1 – Charlie is in pain and is suffering –
    Response: “There is no clear medical evidence that Charlie is in pain. The Supreme Court stated that they were not certain Charlie was/is in pain. What we do know is that he has been stable throughout, his vital signs are stable, his heartbeat is normal which is a recognised sign that there is no significant pain.

    “Charlie was not on pain controlling medication for the first 8 months at GOSH, including before and during the High Court hearing. Simply put there is no proof he is in pain, and the facts suggest otherwise.

  19. – Myth 2 – His parents are unnecessarily prolonging his pain and suffering –
    Response: “The proposed treatment is non-invasive, it is administered via his milk. If there is no proof he is in pain – see above – then to say his parents are prolonging his pain and suffering is wrong – they are working to improve his life. They are seeking treatment that is intended to make him (much) better off.

    “Charlie’s parents are only proposing a 3 month trial period for the treatment to be administered, after which it would be clear to see if he responds to treatment.

    “What does increase possible suffering is the legal limbo, where the authorities have refused the possible treatment while they fight Charlie’s parents through the courts.”

    – Myth 3 – His quality of life will not, and cannot, improve –
    Response: “If the treatment works, and there is chance one in ten, then his quality of life will be improved significantly. Who is to judge that his potential improved quality of life would not be good enough to allow him to live! Such logic would open the floodgates to sentencing all the terminally ill, the disabled, the mentally disturbed, the sufferers of diseases without cure (such as diabetes, and many cancers) to death, and legal withholding of treatment.

    “This is not, and cannot, be the norm. Quality of life is relative. Ultimately, we cannot all have the same quality of life, but we cannot also judge that a life less enjoyable than what we deem acceptable, should simply be terminated.”

    – Myth 4 – Charlie is severely/catastrophically/irreparably/irreversibly brain damaged –
    Response: “This has not been proven nor is it the conclusion of the MRI or EEGs that have been prepared for Charlie. Furthermore, there is no proof that he is suffering from such alleged severe brain damage. Charlie is not brain dead. The doctors willing to treat him would not have accepted to treat him if he were brain dead. They were clear on that.

    “If the proposed treatment works as expected the result will be to will assist the repair of damaged cells. Charlie will not be a vegetable, he will be able to move, to respond and to interact.

    “Brain damage is not a legitimate reason for seeking the termination of life, doctors fight to save patients with brain damage on a daily basis. Charlie’s is not severe, nor irreversible, and since there is a significant chance that it can be improved, means we cannot legally or morally deny him that opportunity.”

  20. On Friday, Great Ormond Street Hospital applied again to the High Court after “claims of new evidence relating to potential treatment for his condition”. On Monday, High Court judge Mr. Justice Francis adjourned the case until Thursday, ordering Charlie’s parents to file written evidence by Wednesday.

    Connie and Chris said in a statement: “We, Charlie’s parents, are ordinary people in an extraordinary situation. Our son Charlie is stable, and a chance has been offered that might help him get better. We as Charlie’s parents, backed by specialist doctors and hospitals around the world, don’t want to turn this chance down.

    “All we ask is the opportunity to do our duty by our child, and we should be able to take him to another hospital who want to treat him and save his life. As long as he continues fighting, how could we do anything but continue to fight for him? If he’s still fighting, then we’re still fighting.”...

    – Myth 5 – Charlie is blind and he cannot open his eyes –
    Response: “Charlie opens his eyes on a daily basis. He had his eyes open the whole time his parents were permitted to take him to the roof of GOSH for a picnic, in June.”...

    – Myth 7 – Charlie’s parents won’t be able to care, or cope –
    Response: “Charlie’s mum is a qualified, experienced carer, and she is best placed to care for her son. His parents are devoted, and have given up their lives to fight for Charlie, they are fully able to cope, and have done so admirably for the past 8 months.”

    – Myth 8- The treatment is experimental –
    Response: “The treatment is, in fact, supported by 5 researchers, and 2 treating doctors (clinicians). There is a growing body of medical support.

    “There is also ethical support, as set out in the published Lancet article, written by Prof Julian Suvalescu of Oxford University.”