LONDON — The father of baby Charlie Gard, who has been fighting London doctors in court for months to be allowed to try to save his son’s life, shouted at a lawyer in the U.K.’s High Court of Justice in frustration Monday.

“When are you going to start telling the truth?” Chris Gard demanded of an attorney representing the Greater Ormond Street Hospital that has been preventing the parents from seeking novel medical treatment for their baby in the United States and wants him disconnected from life support.

“It’s not the truth, I’m telling you,” Connie Yates, the baby’s 31-year-old distraught mother, told the judge. “I’m really sorry — can you listen to me?

“They said we could go to America as long as we had the money. Now they’re saying we can’t.

“It’s not fair; it’s not fair. Ten percent — if that was your son, you would take that chance. He’s our son. Please listen to us.”

The parents’ frustration reflects the feelings of many of the 350,000 people who signed a petition to support them, held prayer vigils and protests in front of British embassies and donated nearly $2 million to a GoFundMe campaign for the medical care for their 11-month-old baby, who is at the center of a roiling legal battle that pits doctors against doctors and ethicists against ethicists.

Emotions have run high for months in this ordeal, as Charlie’s parents have lost appeal after appeal to allow their baby to travel from the London hospital where he is currently fighting for his life in an intensive care unit to the United States or Italy, where doctors have offered to try experimental but non-invasive interventions for his rare genetic disorder.

Judge Nicholas Francis, who presided at the two-hour hearing, ruled against the couple in April in favor of the hospital doctors’ claim that seeking treatment was “futile” and not in Charlie’s “best interests.”

He also ruled that the doctors could disconnect the baby’s life support against his parents’ wishes so he could “die with dignity.”

When that decision was read in April, Charlie’s father, a postman who has championed his son and carried the baby’s small toy monkey at press conferences, shouted, “No!” But the decision was upheld by the U.K.’s Court of Appeal and Supreme Court and the European Court of Human Rights, and the doctors also have since used it to refuse the couple the right to take their baby home to die.

In response to legal objections against Francis hearing new evidence being presented at this unprecedented eleventh-hour appeal because he already made up his mind on the case, Judge Francis replied: “I did my job. I will continue to do my job.”

Judge Francis also seemed to swipe at President Donald Trump, who tweeted support for the baby’s family a week earlier and fueled the global backlash against his decision, when he told the court: “I have to decide this case not on the basis of tweets, but on the basis of clear evidence.”

 

Pope Francis

Pope Francis has also garnered huge attention for his support of little Charlie.

A Vatican spokesman issued a statement July 2 that said: “The Holy Father follows with affection and emotion the story of Charlie Gard and expresses his own closeness to his parents.”

“He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”

Pope Francis also extended an invitation to admit the baby to the Vatican’s Bambino Gésu Hospital and offered the family Vatican passports if it would help, but that was prevented by legal hurdles.

The papal intervention appeared to be in repudiation of a statement released three days earlier by the Vatican’s Pontifical Academy for Life that supported the court’s decision, stating that “the wishes of parents must be heard and respected, but they, too, must be helped to understand the difficulty of their situation and not be left to face their painful decisions alone.”

Archbishop Vincenzo Paglia, the president of the academy, wrote that the situation was “complex,” and “we must also accept the limits of medicine and […] avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.”

Angry Catholics read the academy statement as a betrayal of centuries of Catholic defense of the sanctity of life and parental rights. Writing in The Federalist, Daniel Payne said it waffled “between limp-wristed equivocations and outright willful ignorance of Church teaching.

“If this is where the Vatican now makes its stand, then the most vulnerable members of society — which is to say all of us, at some point — are in trouble.”

Payne told the Register he found the Pope’s later support “heartening and encouraging.”

Speaking to EWTN News Nightly July 6, Archbishop Paglia explained that his initial statement was intended primarily as an explanation of “the applicable general principles” involved in the case and made additional comments in support of Charlie Gard and his parents.

“The Pope, the Vatican and all of us must pray for Charlie and his parents,” Archbishop Paglia said. “Together we must be vigilant that the rights of Charlie and those of all children are recognized and defended. All human life is sacred and was given to us as a precious and fundamental gift.”

 

Last Chance in Court

The family’s fresh legal chance came after the Greater Ormond Street Hospital reopened the case, saying two new hospitals had presented new evidence about the promise of the nucleoside therapy that Gard’s parents want to try for Charlie, who is one of only 16 children in the world with the mitochondrial disorder that causes progressive muscle weakness and affects the brain.

One letter, written on Vatican Bambino Gésu Hospital letterhead, states that “there is substantial direct and indirect evidence clearly demonstrating that deoxynucleosides cross the [blood-brain barrier] and can correct imbalances in the mitochondrial dNTP pools” — a reference to the disputed nucleoside therapy that the parents are seeking for Charlie that the courts determined to be “futile.”

Two photographs posted on the Facebook page “Charlie Gard’s Fight” show before-and-after shots of a little girl who apparently made a remarkable recovery on the therapy and say: “Charlie needs the same medication.”

But lawyers for Greater Ormond Street Hospital argued that there is no “new evidence” for the judge to consider.

Judge Francis read a statement from a hospital staff member who said that doctors and nurses were under “extreme strain” and decided to expedite the case to Thursday from its scheduled hearing in two weeks’ time.

“Staff feel it is desperately unfair to Charlie,” Judge Francis said, “week after week, knowing that every step they take for Charlie is against his welfare.”

Public sympathies seem to be leaning towards the couple fighting the hospital, on whom the bulk of the strain seems to have taken a toll; Charlie’s mother, who had described the ordeal as a “living hell” to the BBC, cried throughout the hearing, and his distraught father was seen punching a wall as he left the courtroom.

In fact, the earlier court decision recognized Charlie’s parents as exceptionally devoted parents seeking his best interests, and Gard’s mother has said that Charlie is not on painkillers and does not even require an IV.

“I couldn’t sit there and watch him in pain and suffering. I promise you I wouldn’t,” Yates told the BBC Breakfast show last week, adding: “I think parents know when their children are ready to go and they’ve given up, and Charlie is still fighting.

“It’s horrible that this decision has been taken out of our hands. It’s not just about us knowing best — it’s about having other hospitals and doctors saying we want to treat [Charlie], and we think it’s the best thing to do.“

 

Ethicists Disagree

Ethicists have lined up on opposite sides of the case. Julian Savulescu, the Uehiro Chair in Practical Ethics at the University of Oxford, told the Register that he believes Gard’s parents ought to have been allowed to take their baby to the United States for treatment.

“The courts have deferred to one group of doctors who are experts in the facts, but they are not experts in the ethics,” he said. “It’s not as if they are taking him to a shaman or a witch doctor.”

In a July 7 statement, the Philadelphia-based National Catholic Bioethics Center (NCBC) issued a statement noting that the paragraph of Pope John Paul’s 1995 encyclical Evangelium Vitae referenced by the academy “does not argue that if a treatment is aggressive and disproportionate, there is an obligation to reject it. Nor does the encyclical reject the possibility of trying experimental treatments.”

And while the NCBC statement noted that it was difficult to analyze a complex case like this one “solely on the basis of media reports,” it stated that, in general, “With no evidence that the continuing interventions are physically doing harm or causing significant pain, the judgment of the patient or the patient’s proxy should be followed, rather than that of a court or hospital or insurance company.”

The statement also asserted, “When a child’s malady is incurable, the request to bring the child home to die, rather than leaving the child in the midst of hospital machinery, should be respected unless there really are significant reasons to the contrary.”

However, Savulescu noted that other informed observers, including Dominic Wilkinson, another Oxford ethicist and Catholic neonatologist, agree with the court decisions.

“I think this is a case where, if reasonable people can disagree and in the face of uncertainty about the outcomes [for the baby], we ought to respect the parents’ interests,” Savelescu said.

Wilkinson and four other ethicists have written a paper supporting Judge Francis’ decision in the forthcoming Journal of Perinatology. The issue in the Gard case “is not that of parents wanting to stop treatment, but of parents’ desire to try an experimental therapy that has the potential for additional suffering to the child,” they say.

The Italian medical association Scienza & Vita (Science and Life) has supported the parents’ position, stating that Charlie’s state “is not terminal.” The court’s decision that death is in his “best interests,” it said, reflects “a mental attitude that is polluting the roots of medical practice, legislation and widespread sentiment: the idea that human beings, with a low quality of life, have a lower dignity and worth than others, and that it is unreasonable to waste on them valuable resources that could be destined elsewhere. It is the ‘throwaway’ culture of which the Charlie case has become a tragic symbol.”

 

Precedent-Setting Case

Professor Savulescu said the issue is a “complex” secular ethical argument about “the prospects of having a life worth living not worth taking” and “not a religious or right-to-life argument.”

For hundreds of thousands of pro-lifers watching it, Charlie’s case is a significant right-to-life issue that could serve as an international precedent.

“Who do we think we are — that we decide who gets to live and who doesn’t? Whose life is valuable and whose is not?” Penny Young Nance, president of Concerned Women for America, told a Washington, D.C., news conference hosted by several pro-life groups last Thursday.

“Whose baby is Charlie?” asked Marjorie Dannenfelser, president of the Susan B. Anthony List. “Children are not the property of any state or any institution. They’re not even ‘owned’ by their parents, because they are not commodities to be owned.”

Melissa Moschella, an assistant professor of medical ethics at Columbia University and the author of To Whom Do Children Belong? (Cambridge University Press, 2016), wrote at  Public Discourse that the United Kingdom is “violating the right of Connie Yates and Chris Gard to make a profoundly intimate and important family decision about how best to care for their sick child.”

She points to the case of Jahi McMath, a girl declared dead on neurological grounds by several expert doctors in California but now “uncontroversially alive and even able to make voluntary movements in response to her mother’s commands.”

The Gard case sets a precedent for violating parents’ rights, but also “for state intrusion in all medical decision-making,” says Moschella.

“For the right of parents to make medical decisions on behalf of their children is, in a certain respect, an aspect of the more general right of patients to make autonomous decisions about their own care.”

The only “silver lining” in this tragic case of the baby who has won the hearts of millions, added Moshella, may be the “increased public awareness of the need to be vigilant in defending parental decision-making authority against the encroachments of an overweening state.”

 

Register correspondent Celeste McGovern writes from Scotland.