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U.S. Doctor Fueled Hopes of Ailing British Infant’s Parents London Hospital Reconsiders Decision to Turn Off Sick Baby’s Life Support
(about 1 hour later)
LONDON — A neurologist in the United States has played a curious role in the high-profile case of Charlie Gard, the brain-damaged and terminally ill British infant whose plight has drawn attention from Pope Francis and President Trump. LONDON — In an shift, a London hospital said on Friday that it would reconsider its decision to turn off life support for Charlie Gard, a brain-damaged and terminally ill British infant, in light of “fresh evidence” about a potential treatment.
Defying the consensus of numerous British doctors, the neurologist has kept alive the hopes of the child’s parents by promoting an experimental therapy that he pioneered — even though, when pressed, he conceded that it was unlikely to succeed. The statement from Great Ormond Street Hospital was the latest twist in a case that has raised difficult bioethical and legal questions, and has caught the attention of Pope Francis and President Trump.
The London hospital treating the infant and a guardian appointed to represent his legal interests have said there is no significant prospect of saving him, and they have been granted permission to turn off life support. Charlie, 11 months old, has a rare and debilitating genetic condition that has no cure, and the hospital said that letting him die was the only humane option to end his potential pain and suffering. Great Ormond Street Hospital, where the boy has lived since October, had won a series of court rulings, most recently last week, authorizing it to withdraw life support.
The parents are convinced, however, that the American doctor’s therapy might help their son — even though it has never been tested on someone with Charlie’s particularly severe form of a rare and debilitating genetic condition. On Friday afternoon, however, the hospital changed course.
“There’s further scientific research that this medication would work for Charlie,” the boy’s mother, Connie Yates, told ITV’s “Good Morning Britain” on Friday. “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.” “Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment,” the hospital said in the statement. “And we believe, in common with Charlie’s parents, it is right to explore this evidence.”
Whether the boy is suffering is a main point of contention. “No one can be certain whether or not Charlie feels pain,” a judge found on April 11, though he ruled that it would be in the boy’s best interests “to let him slip away peacefully and not put him through more pain and suffering.” The boy’s parents are convinced that an experimental therapy, developed by a neurologist in the United States, may help their son recover some functions — even though it has never been tested on someone with Charlie’s particularly severe form of the disease, known as mitochondrial DNA depletion syndrome.
An appellate court agreed, citing “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.” The hospital said on Friday that it had not changed its view that Charlie had experienced “catastrophic and irreversible brain damage” and that the experimental treatment, known as nucleoside therapy, “would be futile and would prolong Charlie’s suffering.”
A review of the legal record shows that the neurologist played a central and at times confusing role in court deliberations — veering from optimism to pessimism and back again. Nonetheless, the hospital said, it would ask the High Court — which on April 11 ruled in the hospital’s favor — to look at the case again “in light of the claimed new evidence.” The hospital added: “This is not an issue about money or resources, but absolutely about what is right for Charlie.”
The neurologist in the United States has played a central and at times confusing role in the courts’ deliberations — veering from optimism to pessimism and back again.
Courts have ordered journalists not to identify the neurologist, whom court papers refer to only as Dr. I.Courts have ordered journalists not to identify the neurologist, whom court papers refer to only as Dr. I.
Dr. I got involved in late December, after the family of a Baltimore boy reached out to him on the British family’s behalf. That boy has a different, and less severe, form of Charlie’s disease: mitochondrial DNA depletion syndrome. Dr. I got involved in late December, after the family of a Baltimore boy reached out to him on the British family’s behalf. That American boy has a different, and less severe, form of Charlie’s disease.
The experimental treatment, known as nucleoside therapy, has been tested on mice and on 18 people with the TK2 mutation — including the Baltimore boy. But it has never been tried on someone with Charlie’s form of the syndrome, caused by a mutation in a gene called RRM2B. Dr. I’s nucleoside therapy has been tested on mice and on 18 people with the TK2 mutation — including the Baltimore boy. But it has never been tried on someone with Charlie’s form of the syndrome, caused by a mutation in a gene called RRM2B.
When Charlie’s doctors asked for evidence that the therapy might help, Dr. I replied, “There is no direct evidence, but there is a theoretical scientific basis for saying it could.”When Charlie’s doctors asked for evidence that the therapy might help, Dr. I replied, “There is no direct evidence, but there is a theoretical scientific basis for saying it could.”
The hospital was open to the idea, but after Charlie suffered a series of epileptic seizures, doctors changed their minds, concluding on Jan. 13 that treatment would be futile.The hospital was open to the idea, but after Charlie suffered a series of epileptic seizures, doctors changed their minds, concluding on Jan. 13 that treatment would be futile.
Nonetheless, the parents began a campaign to raise money to take their son to the United States for the treatment. Soon after, both the hospital and the parents went to court, where Dr. I’s views were sought again.Nonetheless, the parents began a campaign to raise money to take their son to the United States for the treatment. Soon after, both the hospital and the parents went to court, where Dr. I’s views were sought again.
In a March 23 letter, the neurologist said that he “cannot predict the outcome,” but that there was a “scientific rationale that the treatment could potentially ameliorate RRM2B deficiency.”In a March 23 letter, the neurologist said that he “cannot predict the outcome,” but that there was a “scientific rationale that the treatment could potentially ameliorate RRM2B deficiency.”
However, after reviewing new brain-scan data a week later, Dr. I appeared to back down, telling the court that it “is very unlikely that he will improve with that therapy.” He acknowledged that the brain damage was most likely irreversible, but he declined to categorically rule out the possibility of some recovery.However, after reviewing new brain-scan data a week later, Dr. I appeared to back down, telling the court that it “is very unlikely that he will improve with that therapy.” He acknowledged that the brain damage was most likely irreversible, but he declined to categorically rule out the possibility of some recovery.
The parents persisted, producing a new letter from the neurologist, dated May 22, in which he once again took an optimistic approach: “In the best-case scenario, Charlie’s condition would stabilize, improve partially or continue to improve with long-term therapy, as we have seen in patients with TK2. Ideally, the treatment will ameliorate the seizures and allow more normal brain functions.”The parents persisted, producing a new letter from the neurologist, dated May 22, in which he once again took an optimistic approach: “In the best-case scenario, Charlie’s condition would stabilize, improve partially or continue to improve with long-term therapy, as we have seen in patients with TK2. Ideally, the treatment will ameliorate the seizures and allow more normal brain functions.”
An appellate court was unconvinced.An appellate court was unconvinced.
Desperate parents “may lose their objectivity and be willing to ‘try anything,’ even if, when viewed objectively, their preferred option is not in a child’s best interests,” the court found on May 23.Desperate parents “may lose their objectivity and be willing to ‘try anything,’ even if, when viewed objectively, their preferred option is not in a child’s best interests,” the court found on May 23.
Britain’s highest court concurred, as did the European Court of Human Rights in a ruling last week. Britain’s highest court agreed, and last week, so did the European Court of Human Rights. But the pope and Mr. Trump weighed in with expressions of support this week, focusing a spotlight on the case.
What happens now is unclear. On Thursday, NewYork-Presbyterian Hospital/Columbia University Medical Center reiterated an offer to treat the child, either as an inpatient in New York or by shipping the unapproved drug for the experimental treatment to the hospital in London. The London hospital did not identify the two international institutions that have offered to help, but one of them appears to be NewYork-Presbyterian Hospital/Columbia University Medical Center. On Thursday, that hospital offered to treat the child, either as an inpatient in New York or by shipping the unapproved drug for the experimental treatment to the hospital in London.
Ms. Yates told ITV on Friday that five doctors who specialize in Charlie’s disease — two in England, one in Italy, one in Spain and one in the United States — said they believed that the experimental treatment could work.
“There is potential for him to be a completely normal boy, but we don’t know, as you just don’t know until you try,” Ms. Yates said, adding, “There’s around a 10 percent chance of this working for Charlie.” She did not explain how she had arrived at that estimate.“There is potential for him to be a completely normal boy, but we don’t know, as you just don’t know until you try,” Ms. Yates said, adding, “There’s around a 10 percent chance of this working for Charlie.” She did not explain how she had arrived at that estimate.
Claire Fenton-Glynn, a legal scholar at the University of Cambridge, said that the last-ditch offers of help were not legally relevant.Claire Fenton-Glynn, a legal scholar at the University of Cambridge, said that the last-ditch offers of help were not legally relevant.
“The central issue in this case is not the availability of treatment — there has always been a U.S. hospital willing to treat him — but, rather, that the courts have determined it is not in Charlie’s best interest,” she said.“The central issue in this case is not the availability of treatment — there has always been a U.S. hospital willing to treat him — but, rather, that the courts have determined it is not in Charlie’s best interest,” she said.
Kenneth Prager, a professor of medicine and director of clinical ethics at Columbia University, who is not involved in the case, disagreed. The evidence on pain is unclear, he said, and the parents’ wishes should be paramount. “Unless the parents are abusive, I think it is dangerous for society to arrogate to itself the power to override parental wishes and have the child die when they are clearly loving parents willing to expend time and resources to help their child,” he said.Kenneth Prager, a professor of medicine and director of clinical ethics at Columbia University, who is not involved in the case, disagreed. The evidence on pain is unclear, he said, and the parents’ wishes should be paramount. “Unless the parents are abusive, I think it is dangerous for society to arrogate to itself the power to override parental wishes and have the child die when they are clearly loving parents willing to expend time and resources to help their child,” he said.
That is also the view of Ms. Yates, who told ITV: “Euthanasia is illegal. Suicide is illegal. How is this legal?”That is also the view of Ms. Yates, who told ITV: “Euthanasia is illegal. Suicide is illegal. How is this legal?”
Ms. Yates said that she had been preparing last week to say goodbye to Charlie, until the White House got involved.Ms. Yates said that she had been preparing last week to say goodbye to Charlie, until the White House got involved.
“It sounds ridiculous, but when I cut his nails I keep the clippings, in case it is the last time I cut them,” she said. She had started preserving her son’s strands of hair and nail clippings.
“He was starting to look like a nutty professor, so I thought I’ve got to cut the sides — I wasn’t allowed to cut the top bit,” she said. “I got to keep his hair, as well. Just those little things I keep. It sounds ridiculous, but when I cut his nails I keep the clippings, in case it is the last time I cut them.”