A battle over terminally ill British boy
His doctors want to end life support; his parents want to try an experimental therapy. Trump offers help.
LONDON — For months, Charlie Gard’s parents have held out hope for a miracle.
Doctors at London’s Great Ormond Street Hospital for Children have said there is nothing more they can do for the infant, who suffers from an extremely rare genetic condition that has left him blind, deaf and unable to move or breathe on his own.
But Connie Yates and Chris Gard, who are in their 30s, want to bring Charlie to the United States, where they say there is an experimental drug treatment available that might give him more time.
Three British courts have supported the hospital’s request to withdraw life support against the parents’ wishes. Then came the crushing news that the European Court of Human Rights in Strasbourg, France, had declined to take up the case.
“He will fight to the very end, and he’s still fighting, but we’re not allowed to fight with him anymore,” Charlie’s father said in a video released by the couple last week. “Our parental rights have been stripped away.”
The heart-wrenching case, which pits the opinion of a highly regarded British medical institution against the wishes of the child’s distraught parents, has brought into sharp relief the difficult ethical and legal questions that arise when doctors and families disagree about the care of a terminally ill child.
Pope Francis expressed support for the family Friday, declaring in a tweet that “to defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.”
Officials at the Romebased Bambino Gesu Hospital said they would ask their Great Ormond Street counterparts whether Charlie might be transferred to their care for the time that he has left to live.
On Monday, President Trump weighed in. “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so,” Trump tweeted, although it was not clear what he had in mind.
Neither the parents nor the hospital could be reached for comment late Monday. However, the hospital has posted a statement on its website in which it gives its reasons for objecting to the transfer to the U.S., namely that the child’s medical team does not believe the treatment there will improve his quality of life.
“One of the factors that influenced this decision was that Charlie’s brain was shown to be extensively damaged at a cellular level,” the statement said. “The clinician in the U.S. who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred.”
Charlie, who will be 11 months old Tuesday, appeared to be perfectly healthy when he was born in August. But within weeks, his parents noticed that he was less able to lift his head and support himself than other babies his age.
By the time Charlie was admitted to the hospital in October, court records show, he had stopped gaining weight and become lethargic, and his breathing had become shallow. Tests revealed a condition known as infantile onset encep halo my op at hi cm it o ch o nd rial DNA depletion syndrome. By March, Charlie’s doctors had concluded that to prolong treatment would cause the child unnecessary suffering, so the hospital asked a court for permission to take him off a ventilator.
But his parents had found a doctor in the U.S. who was willing to give him an experimental treatment known as nucleoside therapy that had shown some promise with children afflicted with another form of mitochondrial depletion. They set up a GoFundMe page and raised more than $1.7 million to take Charlie to the U.S. “He literally has nothing to lose but potentially a healthier, happier life to gain,” Charlie’s mother wrote on the page.
In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice said it was “with the heaviest of hearts” that he acceded to the hospital’s request to “withdraw all treatment, save for palliative care, to permit Charlie to die with dignity.”
Although he agreed with the parents that it would be possible to transfer Charlie to the U.S., he noted the doctor there agreed with his British counterparts that it was “very unlikely that he will improve with that therapy.”
“Subjecting him to nucleoside therapy is unknown territory — it has never even been tested on mouse models — but it may, or may not, subject the patient to pain, possibly even to mutations,” the judge said.
Britain’s Court of Appeal and the Supreme Court of the United Kingdom agreed with that assessment.
Bioethicists in the U.S. said they were not surprised at the courts’ reluctance.
“I think it is in all of our interests to have doctors who are solemnly committed to the core commitment of medicine: Do no harm,” said Dr. James Hynds, senior clinical ethicist at the UCLA Health Ethics Center.
But they said the medical and legal establishment in the U.S. would be reluctant to get in the way of a family that wants to transfer a patient to a credible facility.
“While we have our own medical judgments here, and we may believe very firmly in them, we also recognize that we’re not infallible,” said Aaron Kheriaty, director of the medical ethics program at UC Irvine. “Someone else may take a different treatment approach.”