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Thursday, November 30, 2023

Baby girl dies after U.K. court ordered her removed from life support

Dean Gregory said he knew his daughter Indi was special from the moment he saw her big, round eyes and long, dark lashes when she was born this February. But in the early hours of Monday morning, he saw his 8-month-old little girl take her last breaths while curled up in her mother’s arms.

Her parents had nicknamed her “mito warrior,” a nod to her fight against a rare and incurable condition known as mitochondrial disease. Indi’s death marked the end of the family’s high-profile fight against England’s National Health Service to continue Indi’s treatment, despite doctors saying that she was in pain and that there was not much they could do for her.

The family’s intense legal battle — which would go on to include support from Italy’s prime minister and the Vatican — underscored the challenges of navigating the boundaries between parental autonomy and medical authority when it comes to end-of-life care for children.

For months, the family had pushed the Royal Courts of Justice to keep Indi on life support and transfer her to a pediatric hospital in Rome in hopes of finding alternative treatments. But the court ultimately ruled in favor of Indi’s physicians, who said it was in her best interest that doctors remove life support and allow her to die in a hospice or hospital.

Indi hadn’t left the hospital since birth, and in June, she was diagnosed with mitochondrial disease. The specific mutation she carried is characterized by “respiratory insufficiency, abnormalities in the brain, developmental arrest, and early death,” court records state. Those born with the condition typically survive only into infancy or early childhood, according to the National Library of Medicine.

The family said in court documents that Indi’s condition worsened after she caught an infection at the hospital in August. Throughout her stay at the Queen’s Medical Center in Nottingham, Indi required a ventilator on eight occasions and went into cardiac arrest three times, according to court records. By September, Indi was put on full life support.

That month, the hospital petitioned the High Court in London to “declare it lawful that it is not in Indi’s best interests to receive any critical care or painful interventions, and it is lawful for her treating clinicians to withhold the same.”

Indi’s family disagreed. Her parents said a slew of therapies she had undergone at the hospital, including medication and a ketogenic diet, had led to some improvement — giving them hope that more treatment could prolong Indi’s life.

“On her good days she is babbling, making noises, moving all her limbs,” Dean Gregory said in a statement in October. “She can definitely experience happiness. She cries like a normal baby. We know she is disabled, but you don’t just let disabled people die. We just want to give her a chance.”

A judge sided with the hospital on Oct. 13 — though not without acknowledging that “nobody could fail to be moved by [the parents’] concern for their child.”

“With a heavy heart, I have come to the conclusion that the burdens of invasive treatment outweigh the benefits,” the judge continued in his ruling. “In short, the significant pain experienced by this lovely little girl is not justified when set against an incurable set of conditions, a very short life span, no prospect of recovery and, at best, minimal engagement with the world around her.”

This terminally ill infant will be allowed to die. But first, his parents will say goodbye.

During the following month, the family, supported by the Christian Legal Center — the legal branch of the London-based evangelical advocacy group, Christian Concern — continued trying to convince the High Court, the Court of Appeal and the European Court of Human Rights that Indi should continue to receive care, although their efforts were to no avail. The hospital gave the family until Oct. 30 to make arrangements to move Indi to a hospice.

That day, the Bambino Gesù Pediatric Hospital — a hospital in Rome under the jurisdiction of the Holy See — offered to treat Indi with funding from Italy’s government. Experts from the Roman hospital said the treatment there would “more likely than not” enable Indi to survive without artificial ventilation. The judge, however, stood by his original ruling, saying on Nov. 2 that it would not be in Indi’s best interest to be transferred to Italy.

Over the next several days, Indi was given Italian citizenship. Her case was taken up by Italian Sen. Simone Pillon and Prime Minister Giorgia Meloni, who urged her British counterparts to facilitate the baby’s transfer and vowed to “defend the right of her mom and dad to do whatever they can for her.”

But on Friday, a Court of Appeal judge decried what he called “manipulative litigation tactics” to thwart the orders that British judges had made under careful consideration, calling Italy’s intervention “wholly misconceived.” Indi’s doctors, the judge said, had been put in an “extremely challenging position” by the ongoing legal battle, while evidence showed that her “invasive” treatments at the hospital had caused Indi “significant pain and distress.”

Ultimately, the court ordered Indi’s life support to be removed immediately.

On Sunday, Indi was transferred to a hospice by ambulance. The baby girl slept the whole way there, the Christian Concern said. Meanwhile, well wishes poured in from all over the world — including from Pope Francis, who said in a statement that he was praying for the family and turning “his thoughts to all the children around the world in these same hours who are living in pain or risking their lives because of disease and war.”

Indi had her life support removed when she arrived at the hospice; hours later, she died at 1:45 a.m. local time on Monday.

“The [National Health Service] and the Courts not only took away her chance to live a longer life, but they also took away Indi’s dignity to pass away in the family home where she belonged,” Gregory said in a statement later that day. “They did succeed in taking Indi’s body and dignity, but they can never take her soul.”

From Italy, prime minister Meloni shared the family’s grief.

“We did everything we could, everything possible. Unfortunately it was not enough,” she posted on Facebook. “Happy journey little Indi.”

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