Trump, pope weigh in on case of U.K. child on life support

Boy has extremely rare genetic disease
Pope Francis meets with President Donald Trump at the Vatican on May 24, 2017.
Pope Francis meets with President Donald Trump at the Vatican on May 24, 2017.

LONDON — Charlie Gard, who turns 11 months old on Tuesday, was born with an extremely rare genetic disease. He is blind and deaf, and he cannot breathe or move on his own. He suffers from persistent epileptic seizures.

Now the British infant is at the center of a global debate, drawing in the Vatican and President Donald Trump, over what medical treatment, if any, he is entitled to receive, and who decides — his family, his doctors or the courts.

“These terrible decisions have to be made all the time,” said Jonathan D. Moreno, a professor of ethics at the University of Pennsylvania. “It is very unusual for a case like this to explode on the global stage. They raise difficult moral and ethical questions.”

The London hospital that is treating Charlie has asked permission to remove him from life support. His parents want to take him to the United States, where they believe an experimental treatment has a chance — however remote — of prolonging his life, even though the disease has no cure.

Three courts in Britain agreed with the hospital, as did the European Court of Human Rights, which last week rejected a last-ditch appeal by Charlie’s parents.

But Pope Francis and Trump have also weighed in, adding another dimension to an extraordinarily thorny bioethical and legal dispute that pits Britain’s medical and judicial establishment against the wishes of the child’s parents.

Judges in the case have acknowledged that the case highlights differences in law and medicine — and a U.S. willingness to try anything, however unlikely the possibility of success — but have held that prolonging the infant’s life would be inhumane and unreasonable. The case echoes the one of Terri Schiavo, a Florida woman who was left in a persistent vegetative state after a cardiac arrest and was also the subject of a court battle.

A Vatican spokesman, Greg Burke, told Vatican Radio on Sunday that the pope had been following the parents’ case “with affection and sadness,” praying “that their desire to accompany and care for their own child to the end is not ignored.”

Italy’s top pediatric hospital, which is run by the Vatican, told the Italian news agency ANSA on Monday that it would be willing to take Charlie.

“We understand that the situation is desperate,” said Mariella Enoc, director of Rome’s Bambino Gesu hospital, noting that she had been in touch with British officials to signal a willingness to take the patient, the agency reported. “We are close to the parents in prayer and, if this is their desire, we are open to receiving their child at our structure for the time it will take for him to live.”

Trump, who was not known to have previously expressed a view on the matter, wrote on Twitter on Monday that if the U.S. could help, “we would be delighted to do so.”

Both the pope and the president stopped short of criticizing the court rulings or the hospital. Helen Aguirre Ferré, director of the White House office of media affairs, said Trump had decided to speak out after he learned about “this heartbreaking situation.” Trump has not spoken with the family, she said, and does not want “to pressure them in any way.”

“The president is just trying to be helpful if at all possible,” she added.

Charlie was born on Aug. 4 with encephalomyopathic mitochondrial DNA depletion syndrome. He is thought to be one of only 16 children globally with the condition, the result of a genetic mutation.

Brendan Lee, chairman of the department of molecular and human genetics at Baylor College of Medicine, who is not involved the case, said in a phone interview that mitochondrial depletion syndrome has no cure. “Treatments involve different types of vitamin supplementation, but none have been shown to definitively work through studies,” he said.

Charlie’s parents, Connie Yates and Chris Gard, both in their 30s, have been waging a long and wrenching legal battle to keep him alive. They have raised more than 1.3 million pounds, or about $1.7 million, to help finance experimental treatment in the U.S. There is also an international campaign, with an online petition and there have been street protests in front of Buckingham Palace.

Charlie has been treated since October at Great Ormond Street Hospital, where doctors eventually decided that withdrawing life support was the only justifiable option. “Although Charlie’s parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests,” the hospital said in a statement laying out its position.

Siding with the hospital were the High Court, on April 11; the Court of Appeal, on May 25; and the Supreme Court of the United Kingdom, on June 8.

The High Court ruled that Charlie would face significant harm if his suffering were to be prolonged without any realistic prospect of improvement. Moreover, it said the experimental treatment, known as nucleoside therapy, would not be effective.

Money is not at issue; an academic medical center in the U.S. has offered to provide the experimental treatment. But a neurologist at the hospital, who has offered to oversee the treatment, told the court by telephone: “I can understand the opinion that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy.”

Neither the hospital nor the neurologist was identified in court documents, and the White House has declined to identify either.

The Court of Human Rights ruled last week that the British courts had acted appropriately in concluding that “it was most likely Charlie was being exposed to continued pain, suffering and distress, and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”The case has drawn attention to important differences in legal systems.

Claire Fenton-Glynn, a legal scholar at the University of Cambridge who studies children’s rights, said that under British law, the courts were the final arbiter in medical disputes about the treatment of children.

She noted a 2001 case of conjoined twins, Jodie and Mary, who were born sharing an aorta. Separating the twins would lead to the death of the weaker twin; if they were not separated, both would die. A court ruled that the twins should be separated against the wishes of their parents; as expected, one died.

Courts in the U.S. are less inclined to get involved when there are disputes between parents and doctors, said Moreno of the University of Pennsylvania, stressing that it was usually left to doctors, in consultation with parents, to decide on a child’s treatment.

He noted the case of Baby Jane Doe, who was born in 1983 with spina bifida and whose parents declined to approve surgery to prolong her life. That case led to a law, signed by President Ronald Reagan, that defined instances in which withholding medical treatment from infants could be considered child abuse, but also provided that in certain cases doctors and parents might choose to withhold treatment from seriously handicapped babies when such action would merely prolong dying.

G. Kevin Donovan, director of the Pellegrino Center for Clinic Bioethics at Georgetown University Medical Center and a professor of pediatrics, said that in the United States, if parents insisted on continuing life-prolonging treatment against a doctor’s advice, the child would simply be transferred to another institution willing to comply with the parents’ wishes.

“It doesn’t seem to be a supportable position morally or ethically,” he said of the stance taken by the hospital in London, adding that what is legal and what is ethical are not always the same.

In the Schiavo case, her husband, who was her legal guardian, wanted to have her feeding tube removed, but her parents disagreed, setting off a seven-year fight that ended in 2005, after courts ruled in the husband’s favor. Life support was removed from Schiavo, who died at 41.

In that case, too, the pope, then John Paul II, and the president, George W. Bush, weighed in. Bush signed an act of Congress allowing federal courts to intercede in the case. But their interventions did not ultimately affect the outcome.

There was no immediate response to Trump’s statement from Charlie’s parents, who last week appeared to accept the finality of the courts’ rulings. Photographs of the couple sleeping with their sick child have circulated on social media recently.

“We are really grateful for all the support from the public at this extremely difficult time,” Yates said on Friday. “We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie.”

There was also no immediate reaction from the hospital.

“In Charlie’s case we have been discussing for many months how the withdrawal of treatment may work,” the hospital said. “There would be no rush for any action to be taken immediately.” It added that it would consult the family and that “discussions and planning in these situations usually take some days.”

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