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Dean Gregory said he knew his daughter Indi was special since he saw her big, round eyes and long, dark eyelashes when she was born in February this year. But in the early hours of Monday morning, he saw his eight-month-old baby girl take her final breaths, curled up in her mother’s arms.
Her parents gave her the nickname “Mito Warrior,” a reference to her battle against a rare and incurable disease known as mitochondrial disease. Indi’s death marked the end of the family’s fierce battle against England’s National Health Service to continue treating Indi, even though doctors said she was in pain and that there was little they could do for her.
The family’s intense legal battle – which included support from the Italian prime minister and the Vatican – highlighted the challenge of overcoming the boundaries between parental autonomy and medical authority when it comes to end-of-life care for children.
For months, the family had urged the royal court to keep Indi on life support and transfer her to a children’s hospital in Rome in the hope of finding alternative treatment options. But the court ultimately ruled in favor of Indi’s doctors, saying it was in her best interest for doctors to remove life support and allow her to die in a hospice or hospital.
Indi had not left the hospital since she was born and was diagnosed with mitochondrial disease in June. The specific mutation she carried is characterized by “respiratory failure, brain abnormalities, developmental arrest and early death,” according to court documents. According to the National Library of Medicine, people born with this condition typically only survive infancy or early childhood.
The family said in court documents that Indi’s condition worsened after she contracted an infection in the hospital in August. During her stay at Queen’s Medical Center in Nottingham, Indi required a ventilator eight times and suffered cardiac arrest three times, according to court documents. In September, Indi was placed on full life support.
This month the hospital asked the High Court in London to “declare it lawful that it is not in Indi’s best interests to receive intensive care or painful procedures and that it is lawful for her treating doctors to refuse them.”
Indi’s family disagreed. Her parents said there are a number of treatments available She had undergone treatment in hospital, which included medication and a ketogenic diet, which had led to some improvement – giving them hope that further treatment could prolong Indi’s life.
“On her good days, she babbles, makes noises and moves 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’s 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 — but not without acknowledging that “no one could come around.” [the parents’] Worry about your child.”
“It is with a heavy heart that I have concluded that the burdens of invasive treatment outweigh the benefits,” the judge continued in his ruling. “In short, the significant pain suffered by this beautiful little girl is unwarranted when compared to terminal illnesses, a very short lifespan, no prospect of recovery and, at best, minimal engagement with the world around her.”
This terminally ill child is allowed to die. But first his parents say goodbye.
The following month, with support from the Christian Legal Center – the legal arm of the London-based evangelical advocacy group Christian Concern – the family continued to try to persuade the Supreme Court, the Court of Appeal and the European Court of Human Rights that Indi should continue to be cared for, even if her Efforts were unsuccessful. The hospital gave the family until October 30 to make arrangements to place Indi in a hospice.
That day, the Bambino Gesù Children’s Hospital – a hospital in Rome under the jurisdiction of the Holy See – offered to treat Indi with funding from the Italian government. Experts at the Roman hospital said treatment there would “most likely” allow Indi to survive without artificial ventilation. However, the judge stood by his original decision and declared on November 2 that it was not in India’s interest to be transferred to Italy.
In the next few days, Indi received Italian citizenship. Her case was taken up by Italian Senator Simone Pillon and Prime Minister Giorgia Meloni, who called on their British counterparts to facilitate the baby’s transfer and vowed to “defend her parents’ right to do everything they can for her” .
But on Friday, an appeal court judge condemned what he called “manipulative litigation tactics” to thwart British judges’ orders, which had been issued after careful consideration, and described Italy’s intervention as “totally misunderstood.” The judge said Indi’s doctors had been placed in an “extremely challenging position” by the ongoing litigation, while evidence showed her “invasive” treatments at the hospital had caused Indi “significant pain and suffering.”
Ultimately, the court ordered the immediate removal of Indi’s life support systems.
On Sunday, Indi was taken to a hospice in an ambulance. The little girl slept the whole way there, the Christian company 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 in these hours to all children around the world who are living in pain or losing their lives because of illness and war take risk.”
When Indi arrived at the hospice, her life support machine was withdrawn. Hours later, she died at 1:45 a.m. local time on Monday.
“The [National Health Service] and the courts have not only deprived her of the chance to live a longer life, but they have also deprived Indi of the dignity of dying in the family home to which she belonged,” Gregory said in a statement later in the day. “They have succeeded 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 wasn’t enough,” she posted on Facebook. “Have a good trip, little Indi.”