After a hearing in London’s High Court of Justice on Monday afternoon, July 24, all parties agreed that doctors at the Great Ormond Street Hospital for Children should be allowed to disconnect life support from baby Charlie Gard as soon as his parents have had a chance to say their final goodbyes to their son. The sad and perhaps inevitable premature end of life for 11-month old Charlie could come at any time.
The legal and medical tug of war involving Charlie Gard, his parents, his doctors, and the state had dragged on for months, almost since Charlie was diagnosed last fall with a serious and extremely rare genetic neurological disorder that impaired his chances for normal development and survival. That condition is mitochondrial DNA depletion syndrome. Since early in 2017, Charlie’s parents, Connie Yates and Chris Gard, wanted their child – their first born – to be treated by an innovative but unproven experimental therapy at Columbia University Medical Center in New York. The treatment is known as nucleoside bypass therapy or NBT, an oral medication that theoretically offered the possibility to repair Charlie’s mitochondrial DNA and help it synthesize again by giving him the naturally occurring compounds his body isn’t able to produce. Meanwhile, Charlie’s British physicians maintained pretty much from the outset of his hospitalization that his condition was too far advanced for anything to help him survive longer than a short time and enjoy anything like a decent and pain free quality of life.
The story of little Charlie was covered extensively in the British press and was widely reported around the world including in the United States. Public interest in and support for Charlie’s parents, with both Pope Francis and President Donald Trump tweeting their encouragement, was instrumental in helping to delay earlier court orders giving the hospital legal permission to end Charlie’s life.
Charlie’s last day in court
On Monday afternoon, July 24 at 2 PM BST (British Summer Time), 9 AM US EDT, the latest court proceeding convened in London.
In the Matter of the Inherent Jurisdiction of the High Court and in the Matter of Charles Gard (DOB 04/08/2016)
Great Ormond Street Hospital for Children NHS Foundation Trust Applicant
Constance Yates, Chris Gard, Charles Gard (a Child by his Guardian)
The purpose was expected to be the presentation of fresh evidence about Charlie Gard’s medical condition and perhaps a more promising prognosis following new tests and an evaluation of Charlie last week by Michio Hirano, M.D. of the Columbia University Medical Center. The judicial proceedings were expected to last two days. However, within minutes of the hearing getting underway, Grant Armstrong, the attorney representing Charlie Gard’s parents, who were in the courtroom, announced to the surprise and dismay of most of the people who were present that the parents were withdrawing their appeal of the court’s earlier orders that Charlie’s life support should end. The parents were also ending their effort to take Charlie to the United States for treatment by Dr. Hirano.
According to scores of live tweets from the courtroom by attorney and journalist Joshua Rozenberg, Armstrong said, “Time has run out for Charlie and treatment cannot now offer chance of success.” Rozenberg continued to report in more tweets, sometimes several per minute. “Parents withdraw request for change to original order,” Rozenberg quoted Armstrong as saying – meaning they no longer wanted to challenge earlier court orders that life support should be removed, which would allow Charlie to die.
The scene became emotional as gasps and tears were reported among many people in the courtroom, including Charlie’s parents: “Courtroom silent. . . Supporters and family look pale and shocked.” Rozenberg quoted Armstrong saying the situation is “worthy of a Greek tragedy that they must withdraw now. Window of opportunity for treatment has been lost.”
After Armstrong finished speaking, the attorney representing the hospital, Katie Gollop, addressed the court, followed by the judge, Mr. Justice Francis. “The parents now have to face reality that it is in Charlie’s best interests to die,” the judge said. He also opened the door to introducing subtle criticism of Dr. Hirano, who had not even been publicly identified as a consultant in the case until ten days ago. According to Mr. Justice Francis, “If a doctor is to give evidence to this court, that doctor should see the patient first.” This comment appeared to refer to the fact that Hirano’s medical opinion had been offered in prior High Court proceedings before he first examined Charlie on July 17. Judge Francis also criticized news analysts and some of Charlie’s supporters: “The notion that Charlie was a prisoner of the NHS [National Health Service] is the antithesis of the truth.” The judge reserved special criticism for new media: “The world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based.”
Charlie’s mother takes the witness stand
Connie Yates requested the opportunity to address the court. According to Rozenberg’s tweets, Ms. Yates said Charlie “is not brain dead. . . No evidence of irreversible brain damage. . . A whole lot of time has been wasted” – apparently a reference to the court not allowing Charlie to be taken to New York in a timely manner for Dr. Hirano’s medical treatment. “Treatment would have improved his quality of life.”
“Our poor boy has just been left to lie there for months without treatment … left with this illness to deteriorate to point of no return,” Connie Yates said later in a statement outside of court.
With a sense of resignation, Connie Yates told the court (according to Rozenberg’s tweets): “His illness has deteriorated to the point of no return. But no organ has failed. No proof he is in pain or suffering.” However, “prospect of improvement now too low. Deterioration in his muscles means there is no way back.” After thanking the lawyers and the hospital, Ms. Yates promised to fight for other children with similar afflictions, adding “Our son is a warrior. His spirit will live on for eternity. We owe it to him to not let his life be in vain.”
In the hours after the court proceeding concluded, legal briefs were issued by the various parties. The public face of good feeling, sensitivity to the pain of Charlie’s parents, and lip service to unity that these same players put on during the afternoon court session quickly dissipated as their complete legal statements about the case became available.
Target: Dr. Hirano
The most surprising development after court adjourned involved mounting attacks on Michio Hirano, M.D., the internationally recognized neurological medicine research and treatment expert from Columbia University. These criticisms suddenly appeared out of nowhere and in an apparently well-coordinated front. Within hours of the court hearing ending, London newspapers were blaring headlines like The Sun’s “CHARLIE BACKLASH Great Ormond Street Hospital slams Charlie Gard’s US doctor, Michio Hirano, claiming he had ‘financial interest’ in the experimental drug.” Almost all of the reader comments that were published attacked Dr. Hirano, with many readers vilifying him as a “quack.”
After following this case as closely as one could from outside of the UK, it is my conclusion that it ultimately represents an iconic battle – pitting the best, most traditional, and strongest element of humanity – a mother’s and a father’s love for their child buttressed by their traditional family values – against the power of the secular-socialist state as represented by the medical industrial complex. The latter is clearly more powerful and domineering in the UK because of its 69 year-long experiment with single-payer socialized medicine than in the US (although that situation in the United States, under the imminent threat of single-payer, is changing fast).
The entire British establishment – with the exception of some mainstream media – was able to mobilize its powerful resources to attempt to control the narrative, but some of the court filings on Monday afternoon revealed that the principal establishment players had lost some of that control – hence their lashing out at Dr. Hirano in an apparent attempt to make him a scapegoat. As in, If not for this foreigner Hirano (an Asian-American at that – and I wouldn’t doubt that there is an element of British upper class racism lurking behind the attacks), none of this nonsense would have happened or it wouldn’t have gotten as bad for the reputation of the hospital as it did. The hospital is also alleging that Dr. Hirano has a financial interest in the new therapy that he and his colleagues at Columbia are developing. Oh, the horror! A profit motive! I guess in the socialist-collectivist-anti-free market UK, that practice is the equivalent of a mortal sin.
In addition to the emotional tug that this story represents to anyone with a pulse, another reason that it hits close to home for me is because I covered a half dozen analogous cases decades ago involving parents of sick children who were confronted by the medical establishment and the state when they wanted to pursue a different therapy than the one(s) being pushed by the doctors (many of whom were little more than hacks). The same kinds of qualities that were apparent in the families that I reported on decades ago can be observed in the Charlie Gard family: so-called ordinary middle class people, with intelligence, common sense, and backbone – the bedrock of the nation – whose love for their child came first and who somehow found the strength to stand up for their rights and fight the system to the bitter end. And, when their story started to get out, hundreds of thousands if not millions of people became interested in baby Charlie’s future and came forward to support the family with almost $2 million in contributions.
Charlie’s parents will now confer in private with his doctors at the Great Ormond Street Hospital to decide how long they will have to say goodbye to their son, who would have turned one year old on August 4, before his life support – a ventilator to facilitate his breathing – is turned off.
The Gard family’s attorney Grant Armstrong said the devastated parents now “wish to spend the maximum amount of time they have left with Charlie.” He added that Chris Card and Connie Yates “wish to treasure their remaining time with Charlie, however short that may be.”
Peter Chowka is a veteran journalist who writes about national politics, media, popular culture, and health care. His new Web site is AltMedNews.net. Peter’s July 13, 2017 one-hour interview on The Hagmann Report can be viewed here