Thursday, July 27, 2017

Charlie Gard and Baby Bollinger

A baby is born with intense physical and developmental problems. Extensive treatment is necessary to preserve his life, but with an unsure likelihood of success. The doctors in charge refuse to treat him on the grounds that it will likely be unsuccessful and that the child is suffering. They remain inactive, despite pleas for the boy’s life.

At the last moment, one doctor steps forward to attempt a life-saving treatment, but by then it is too late. The baby dies and the watching world is left to make sense of tragedy.

You may be surprised to hear that this is not the story of Charlie Gard in 2017, but of a newborn known as “Baby Bollinger,” who died in Chicago in 1915. He was less than a week old.

The details of Baby Bollinger’s condition still aren’t completely clear. Sources say that he was born with some paralysis on one side of his body, was missing or had deformities in his ears, and his shoulder may have been connected directly to his head. His spine was unusually curved and he had a significant problem with his intestinal tract. All accounts agree that immediate surgery was necessary to save his life.

Dr. Harry Haiselden, the chief of hospital staff, refused to operate on the child. He believed that, though the child had a good chance of survival from surgery, “There is no doubt the child would be defective mentally and morally if allowed to live. It might be criminal. Certainly it would be dependent. It would be a burden to itself and to society.”

While there are great differences between Baby Bollinger and Charlie Gard, there are also eerie similarities. In both cases, there was disagreement on the child’s prognosis and level of suffering. In both cases, elites in medicine and government were allowed to run out the clock on critically ill children. For both children, their ultimate “usefulness” dictated how hard the world would fight for their survival.

As with Charlie, the fate of Baby Bollinger polarized the American public. Haiselden received hundreds of irate phone calls begging him to reconsider. Many press outlets lambasted him. However, Haiselden and his actions had a sinister but powerful advocate: the eugenics movement…

By 1915, America’s elites were convinced that the survival of humanity depended on eliminating the weak from the gene pool. Race and class-driven social Darwinism was fueled by “scientific” research from respected organizations like the Rockefeller Foundation and the Carnegie Institution. It had vocal support from folks like Margaret Sanger, Woodrow Wilson, Alexander Graham Bell, and Haiselden. From the halls of academia to high society, eugenics was considered scientific fact.

Armed with these “facts,” 33 states enacted laws for forced sterilization of the “feeble-minded,” the deaf, epileptics, the handicapped, and others whose lives eugenicists found to be unworthy. This led to the forced sterilization of more than 60,000 Americans. Not surprisingly, immigrants, African-Americans, and the poor were most often those deemed “unfit.”

So when Baby Bollinger’s case came into the public eye in 1915, many thought that allowing the “defective” newborn to die was for the good of both the child and society. Haiselden was doing the world “a favor.” Ironic proof of this can be found in one of Haiselden’s most ardent defenders: Helen Keller. She proposed that juries of medical experts should, “decide whether a man is fit to associate with his fellows, whether he is fit to live.”

While renowned eugenicist and birth control advocate Margaret Sanger did not specifically comment on the Bollinger case, one can only assume her sentiments. In Sanger’s 1922 book “The Pivot of Civilization,” her thoughts on biological frailty are quite clear: “Every single case of inherited defect, every malformed child, every congenitally tainted human being brought into this world is of infinite importance to that poor individual; but it is of scarcely less importance to the rest of us and to all of our children who must pay in one way or another for these biological and racial mistakes.”

Thankfully, these two tragedies are not identical. Charlie Gard has loving parents who have fought intensely for their son’s chance to survive. Baby Bollinger died with the tacit consent of his parents, who agreed to let Haiselden treat him as he saw fit.

And while Haiselden’s perverse belief in eugenics made him boast of the deaths of many weak, imperfect newborns in his care, Charlie’s death will be universally mourned. I am certain that nurses, doctors, courts, and the greater public who support the decision to end Charlie’s treatment do so out of love and sympathy for a sick, helpless child.

Still, there is a frightening similarity that cannot be ignored: Charlie Gard and Baby Bollinger were both deemed unworthy of survival. Doctors, courts and the public have weighed in and decided that death is superior to lives like theirs. In different nations, a century apart, the systems in place to protect human life have failed two of society’s most helpless members.

And while no one celebrates this little boy’s tragic passing, do not many think it’s “all for the best?” Would they not say in hushed tones to close friends, “Maybe it would have been better if he were never born at all?” Don’t many well-intentioned folks believe as twentieth-century eugenicists believed—that Charlie’s death is nature “righting itself?”

No one has made Haiselden’s evil, perverse argument that Charlie Gard should be allowed to die “for the good of humanity.” But the end result is the same: society’s medical and legal elites have gotten to decide that dying is for Charlie’s own good.

Tragically, Charlie Gard is neither the first nor the last vulnerable child to be let down by the system that is supposed to defend him. With medical technology and knowledge of genetics advancing every day, these moral dilemmas will only become more common.

What’s more, as Western society is increasingly detached from a Judeo-Christian foundation, human dignity is no longer self-evident, endowed by a Creator. As a result, our society lacks the moral vocabulary to explain why a human life that is not “useful” is still sacred. I imagine this struggle will only worsen with time.

The brief but meaningful life of Charlie Gard forces us to confront how we view our society’s weakest members. Sanger saw babies like Charlie as “biological and racial mistakes” and sought the power of the state to enforce their limitation. Charlie’s parents see him as “an absolute warrior” and are grateful “for the joy he has brought to our lives.” In a just society, whose legacy will endure longer: Sanger’s or Charlie’s?

See :


  1. Charlie Gard's mum says Great Ormond Street Hospital 'denied us our final wish' after a judge ruled the terminally-ill tot could not die at home.

    Connie Yates said the family had their own care plan in place - a requirement stipulated by Mr Justice Francis in the High Court yesterday - but were still overruled.

    The devastated mum said two doctors came forward this morning offering their 24/7 services but the judge decided hospice care was in Charlie's best interests.

    She also said a team of intensive care nurses stepped forward and the family were offered the use of a two-bedroom flat, fully equipped with all the required machinery.

    "Despite us and our legal team working tirelessly to arrange this near impossible task, the judge has ordered against what we arranged," Connie said in a statement.

    "We just want some peace with our son - no hospital, no lawyers, no courts, no media, just quality time with Charlie away from everything to say goodbye to him in the most loving way.

    "We've had no control over our son's life and no control over our son's death."

    A judge today approved a plan which will see Charlie Gard ''inevitably'' die shortly after being moved to a hospice and having his life support treatment withdrawn.

    Mr Justice Francis has made public details of an order which will result in Charlie dying shortly after leaving Great Ormond Street Hospital.

    The judge's order says it is in Charlie's best interests for life-support treatment to be withdrawn.

    It says Charlie should receive palliative care after leaving hospital and being moved to a hospice, which cannot be named for legal reasons.

    It says doctors can then withdraw "artificial ventilation" after a "period" of time.

    The order says everyone involved agrees that the "arrangements" will "inevitably result in Charlie’s death within a short period thereafter".

    Yesterday, he said it was in Charlie's best interests to be moved to a hospice and extubated unless alternative arrangements could be made by noon today.

    The name of the hospice will remain private, as will other, more specific, details.

    Minutes before Mr Justice Francis announced the decision to the court yesterday, Charlie's mum Connie stormed out of the hearing.

    She shouted, apparently at her son's court-appointed guardian: "What if this was your child? I hope you are happy with yourself."...

    The parents' lawyer, Grant Armstrong, had asked for 48 hours to find an intensivist [a board-certified physician who provides special care for critically ill patients] who could look after Charlie for a few days.

    But the judge said the indecision between Charlie’s parents and Great Ormond Street was "compounding" Connie and Chris’ misery.

    "I have gone out of my way to accommodate the parents’ wishes," Mr Justice Francis said in court yesterday.

    "I must consider Charlie’s best interests."

  2. If Charlie Gard had been born 40 years ago, there would have been no doubt about what would, and should, happen. Doctors treating a baby with a rare genetic condition that causes the body’s organs to shut down would have told his parents “nothing more can be done for him”. Charlie – deaf, epileptic, his muscles wasted, his brain probably damaged – would have died peacefully and unremarked. If an experimental US treatment had given such children an estimated 10 per cent chance of survival, his parents would not have known about it. Even if they had, they would have sorrowfully deferred to British doctors.

    Now people believe that medical science can perform miracles and, through the internet, search the world for them. Yet they do not trust the knowledge and judgement of the medical profession. They rally public support and engage lawyers to challenge the doctors, as Charlie’s parents unsuccessfully did in the hope of being allowed to take their child for experimental treatment in America, despite warnings that it would be ineffective and distressing for him. This is a strange situation, the result of medical progress, social media, globalisation and the decline of deference. It causes much heartache to everybody involved but, like Charlie’s death, it is probably unavoidable.

  3. Terminally-ill Charlie Gard will be moved to a hospice and have his life support withdrawn soon after, a High Court judge has decided.

    Great Ormond Street Hospital (GOSH) said it was not in his best interests to spend a long time in a hospice.

    His parents had wanted a private team to care for Charlie so they could have more time with him. "GOSH have denied us our final wish," his mother said.

    The judge approved a plan that will see Charlie die shortly after being moved.

    Mr Justice Francis added that no details about when he would be moved and where could be made public.

    In a statement, the hospital said it deeply regretted "that profound and heartfelt differences" between Charlie's doctors and parents have "had to be played out in court over such a protracted period".

    Parents, Connie Yates and Chris Gard, and GOSH had until 12:00 BST to agree Charlie's end-of-life care. However, an agreement was not reached by the noon deadline.

    The parents' lawyer, Grant Armstrong said they wanted to spend days with Charlie at a hospice before his death.

    But hospital bosses said they could not agree to the arrangement as his parents had not found a paediatric intensive care specialist.

    Commenting on the decision, Connie said: "We just want some peace with our son, no hospital, no lawyers, no courts, no media, just quality time with Charlie away from everything, to say goodbye to him in the most loving way.

    "Most people won't ever have to go through what we have been through, we've had no control over our son's life and no control over our son's death.

    "Despite us and our legal team working tirelessly to arrange this near impossible task, the judge has ordered against what we arranged and has agreed to what GOSH asked.

    "This subsequently gives us very little time with our son."

    The hospital said there was "simply no way that Charlie... can spend any significant time outside of an intensive care environment safely".

    It added: "We will arrange for Charlie to be transferred to a specialist children's hospice... who will do all they can to make these last moments as comfortable and peaceful for Charlie and his loved ones."

    GOSH said that "while we always respect parents' views, we will never do anything that could cause our patients unnecessary and prolonged suffering".

    The High Court order says Charlie will continue to be treated in hospital for a "period of time" before being moved to the hospice, which cannot be named for legal reasons.

    It says doctors can then withdraw "artificial ventilation" after a period of time.

    Everyone involved has agreed that the "arrangements" will "inevitably result in Charlie's death within a short period thereafter", the order adds.

  4. In a statement issued on Friday evening, Ms Yates said: "Our beautiful little boy has gone, we are so proud of you Charlie."

    Prime Minister Theresa May said: "I am deeply saddened by the death of Charlie Gard. My thoughts and prayers are with Charlie's parents Chris and Connie at this difficult time."

    Pope Francis tweeted: "I entrust little Charlie to the Father and pray for his parents and all those who loved him."

    GOSH said it sent its "heartfelt condolences" to Charlie's parents and loved ones.

    US Vice-President Mike Pence tweeted: "Saddened to hear of the passing of Charlie Gard. Karen & I offer our prayers & condolences to his loving parents during this difficult time."...

    In a statement released earlier this month, the Vatican said: "For them he prays, hoping that their desire to accompany and care for their own child to the end is not ignored."

    The US president then offered his support, tweeting: "If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so."

    After his tweet, Prof Hirano co-signed a letter with other medical experts which suggested unpublished data showed therapy could improve Charlie's brain condition.

    They claimed that "ideally" the treatment would first be tested on mice but said that, in Charlie's case, there was no time for such a trial.

    After examining Charlie a couple of weeks ago, Prof Hirano said it was too late for the treatment to work. An MRI scan had shown there was no muscle at all in parts of his body.

    Paying tribute to their son following the end of their legal challenge the couple, both in their 30s and of Bedfont, west London, had described him as an "absolute warrior".

    On Monday Mr Gard said: "Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you.

    "We had the chance but we weren't allowed to give you that chance. Sweet dreams baby. Sleep tight our beautiful little boy."

  5. Truog RD. The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard. JAMA. 2017 Jul 20. doi: 10.1001/jama.2017.10410. [Epub ahead of print]

    At least 3 issues are involved in this case that are at the core of many of the worldwide debates regarding health care delivery: the best interest of the patient, financial considerations, and scientific validity. First, the judge in the trial court explained that the law required him to base his decision solely on what he deemed to be the child’s best interest. Based on testimony from the physicians, the judge ruled that continued treatment would cause Charlie pain and suffering and that, in the absence of a realistic chance of benefit, continued treatment would not be in Charlie’s best interest. The problem with this decision is 2-fold. First, this decision depends on an objective opinion about a subjective phenomenon, namely pain and suffering. Although the clinicians caring for this child apparently believe that he is experiencing pain and discomfort, his parents disagree and have said that they would not be insisting on continued treatment if they thought that he was. In addition, medical treatments in the intensive care unit are almost always associated with some degree of discomfort, but intensive care unit clinicians are well trained and equipped to effectively manage these symptoms. If pain and suffering were the only issue, then an alternative to treatment withdrawal would be to use a standard regimen of analgesia and sedation….

    Advocates of the former view are outraged at the efforts of the hospital to block the parents’ request for transfer to the United States. What gives the hospital the right or the authority, they argue, to say that the chances of success are too small to be worth the effort, particularly since the parents are willing to pay for it with donations they have raised?

    If Charlie’s continued treatment were to be funded through either governmental or private insurance, then a strong case could be made that acceding to the parents’ request would be an irresponsible use of limited resources. But the notion that Charlie’s parents are paying out-of-pocket for this treatment is misleading. The very existence of tertiary care medical centers that are able to do the research and provide the care requested by Charlie’s parents depends on the vast communal investment that has been made by society in the infrastructure of our health care system over many decades. Paying the incremental expenses for the care of 1 patient in a hospital no more covers the cost of that care than paying the incremental costs for a fire truck to come to a home covers the cost of the fire department that makes the trip possible. In other words, society always has a financial stake in how communal services, and in this case health care resources, are used and has a legitimate claim in insisting that these resources be used wisely and for the benefit of all. No one can demand nonbeneficial treatments simply by claiming that they are paying out-of-pocket…

    While the most trustworthy advances come through the performance of well-designed trials, sometimes experimental treatments based on theoretical considerations alone may lead to major breakthroughs. But such successes are rare, and to be worth trying they must meet a threshold of scientific plausibility that transcends theoretical possibility. Whether the proposed nucleoside treatment meets that threshold is a legitimate matter for debate, but based on the lack of either animal or human data to support the use of this approach, as well as evidence of severe neurologic injury that could not be reversed in any case, the consensus of respected experts in the United Kingdom was that it did not.

  6. When his medical team, with second opinions from several leading centres, decided that his brain damage was irreversible, they believed there was nothing that could help him.

    That was six months ago, but they had no power to end Charlie's life support without the backing of his parents.

    That meant Great Ormond Street Hospital had to apply to the courts.
    A succession of judges ruled it was in Charlie's best interests to die, because he may be suffering and the proposed experimental treatment in the United States was "futile".

    Some commentators in the United States said Charlie's plight was the result of the UK having a state-run national health service.
    Mr Justice Francis said that was "nonsensical".

    Many will still question why Charlie's parents were not granted their wish to explore every option, even if the chances of improvement were slim.

    Connie Yates and Chris Gard were buoyed by support from an American neurologist, Prof Michio Hirano, who has pioneered an experimental treatment, a powder called nucleoside therapy.

    But he gave his support without having requested Charlie's full medical records.

    Dr Hirano was invited to examine Charlie in January and eventually did so in July.

    The guardian appointed to represent Charlie in court said if novel therapies were to be offered it was "imperative that those offering to provide them are fully aware of the clinical condition" so that "offers are made on an informed basis and without setting up false hopes and expectations".

    In court, there was discussion of the differing ethical approaches to experimental treatment between the UK and the USA.

    In the United States, it may be considered appropriate to give a patient a drug even though it cannot help them, on the grounds that it helps others in the future.

    In the UK, patients cannot receive drugs that doctors know will not help them personally.

    As well as the legal dispute, there was a second battle fought very effectively online by Charlie's parents.

    They crowd-funded £1.3m, with more than 80,000 donations, and there were petitions and a Facebook site called Charlie's Army…

    The judge said it was one of the pitfalls of social media that the watching world felt it right to have opinions without knowing the facts of the case.

    Doctors and nurses at Great Ormond Street, one of the world's most renowned children's hospitals, were subject to abuse and even death threats - which Charlie's parents condemned.

    In such cases, medical staff always remain anonymous, but this made it hard to counter the repeated anguished public appeals by Charlie's parents, and the moving images of their son.

    Great Ormond Street Hospital said Charlie's parents had tirelessly advocated for what they sincerely believed was right for their son and nobody could fault them for doing so.

    The hospital said it would be giving careful thought to what it could learn from the "bruising" court case - and it added that everyone wished there could have been a less tragic outcome.

  7. He died with his parents by his side a day after the British High Court ruled that he could be moved to a hospice and that his life support could be withdrawn. His death was confirmed by a family spokesman.

    In an emotional statement before the court this week, Charlie’s mother, Connie Yates, noted that her son had “had a greater impact on and touched more people in this world in his 11 months than many people do in a lifetime.”...

    The child’s final moments were not as his parents had hoped. They fought a long and often tense battle in court to control his fate, to take him to the United States for experimental treatment and, finally, to move him to their home in West London to die.

    They lost their fight. On Thursday, Ms. Yates, who works as a caregiver, said in statement that the hospital had “denied us our final wish.”

    “Most people won’t ever have to go through what we have been through,” she said. “We’ve had no control over our son’s life and no control over our son’s death.”

    But the doctors treating Charlie at Great Ormond Street Hospital in central London countered that the “risk of an unplanned and chaotic end to Charlie’s life” at home was “unthinkable.” For months, the hospital had argued that he had irreversible brain damage, that the life support should be removed and that he should be allowed the right to die with dignity.

    “We deeply regret that profound and heartfelt differences between Charlie’s doctors and his parents have played out in court over such a protracted period,” the hospital said in a statement. “We will never do anything that could cause our patients unnecessary and prolonged suffering.”(continued)

  8. (continued)The case laid bare several issues, among them: Should parents or doctors or the courts have the final say in irreconcilable disputes over the treatment of sick children? And at what point should the limits of medicine be recognized and the parents of an infant be compelled to let go?...

    Dr. Robert D. Truog, a physician at the pediatric intensive-care unit at Boston Children’s Hospital and the director of the Center for Bioethics at Harvard Medical School, said that “Charlie’s parents were like parents all over the world — they were willing to do absolutely anything to save the life of their child.”

    He added: “They were the victims, not the cause, of this tragic situation.”

    The parents’ raw emotions played out in the courtroom, where Ms. Yates broke down in tears of frustration, at one point shouting, “What if it was your child?” before fleeing the room. At another moment, Mr. Gard, a mailroom worker, cried out, “Evil” after a hospital lawyer spoke.

    On several occasions, both parents stormed out of the courtroom. Some of the lawyers and journalists covering the case were reduced to tears...

    The case also spurred questions about the wisdom of offering parents the hope of experimental treatment when faced with an incurable disease. That debate took center stage after Dr. Michio Hirano, a neurologist at Columbia University Medical Center in New York, offered Charlie’s parents a ray of hope that an experimental treatment known as nucleoside therapy could improve Charlie’s condition...

    The treatment had been tested on mice and on 18 people with a mutation in a gene known as TK2. But it had never been tried on someone with Charlie’s particularly debilitating form of mitochondrial DNA depletion syndrome, which is caused by a different genetic mutation.

    During an often-acrimonious and emotional High Court hearing this month, Charlie’s parents argued that he should be allowed to receive the experimental treatment. But lawyers for Great Ormond Street Hospital countered that Dr. Hirano had held out hope without even examining the child or reviewing his full medical charts.

    (Dr. Hirano said in a statement he had been contacted by the parents and agreed to speak with Charlie’s doctors to determine whether the experimental therapy he was developing could help improve the child’s condition).

    When Dr. Hirano traveled to London this month to examine Charlie, about six months after he had first been invited, a series of scans showed that the boy had suffered muscular atrophy, that the damage was irreversible and that treatment would be futile.

    Ms. Yates criticized the hospital, saying it had dragged its feet about the treatment until it was too late.

    The hospital consistently stood by its contention that treatment would have been useless and that Charlie had irreversible brain damage.

    “If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering,” it said in a statement.

    Dominic Wilkinson, a neonatologist and professor of medical ethics at Oxford University, said the case offered a tragic lesson about the risks of doctors’ offering uncertain hope to desperate parents. At the same time, he said, the case underscored the importance of mediation during a dispute about treatment, noting that the communication breakdown in the Gard case had all the attributes of a “messy divorce.”

    “To let a child go is incredibly difficult, but it is also incredibly important,” he said. “It is heartbreaking, but we have to know when to say enough is enough.”...

    The parents now face coming to terms with Charlie’s death. Addressing the court this past week, Ms. Yates acknowledged that this would not be easy.

    “We are struggling to find any comfort or peace with all this,” she said. “But one thing that does give us the slightest bit of comfort is that we truly believe that Charlie may have been too special for this cruel world.”

  9. The doctors at the Great Ormond Street Hospital for Children have been caring for Charlie, but they think they've run out of options and things to provide. This gets us to the question: Can doctors ever say it's futile, there's no point in continuing, we've done everything we can; we have to shift to palliation, to support for the family, to support for the patient in terms of pain control, and emotional support in the case of children for parents? Can doctors ever say, that's it, there's no more to do?

    The doctors at this London hospital tried to do that, but the family absolutely did not agree. The mom and dad said, "We don't want to give up on Charlie; we're hearing that there may be some doctors in the United States, two different doctors who have said they might have a treatment that could benefit Charlie."...

    It's a tough moral standoff. In England, more deference is given to doctors than you'd find in the United States. The English standard says if doctors think that what the parents want to do might lead to suffering or pain for the child, then the parents have to yield to a guardian. A guardian was appointed for Charlie, and that guardian agreed with the doctors that it was time to stop. Then Charlie's parents went to court, and they have been all through the British courts, including the UK Supreme Court, which all sided with the doctors. Still, the international media has paid attention to Charlie, and the parents were not ready to let go; they still wanted to do everything possible.

    I think there is a line in the sand which doctors should be able to draw that says, we've reached futility. That doesn't mean abandoning the patient or the family, but it means stopping efforts to try to prolong any treatments that might be causing Charlie to suffer. If indeed he's being harmed, hurt, or suffering in any way, then reaching out to try a long-shot experimental procedure isn't something that doctors at the children's hospital in London have to agree to. Nor is it something if the courts agree and review this that doctors have to say yes, we've got to continue to prolong a life that's turned into one of misery and suffering.

    To me the standard is, is Charlie or any patient harmed or hurt by continuing care? If they are, then consideration should be given to listening to the doctors and saying we've reached the end, it's time to back off, it's time to provide palliation, but we're not going to prolong a life where there's just suffering and nothing more. If Charlie isn't suffering, if he's not in pain, then I think the parents have more of a case to driving care on; this also goes for anyone who's taking care of a grandparent or anybody else. If the person isn't suffering yet and they want to continue care, that's a different story.