Indi Gregory dies: What went wrong, and what happens next?

“The court doesn’t have to wait until it’s shown that the parents are being harmful. They only have to show that there are two sets of people who are interested in the best interest of the child — the doctors and the parents — and they can’t agree. And so the court is going to make the decision for them,” Jones explained to CNA. 

But, as demonstrated in the Indi Gregory case, this sometimes means the parents’ wishes are discounted in favor of the hospital trust, which he said “almost always opposes transfer of care.” 

Medical disagreements in the Gregory case

Of course, disputed medical cases are by definition difficult to decide. In many cases, reasonable people might come to different conclusions. Jones said most cases of this type are resolved, usually by parents finally agreeing to withdraw life-sustaining treatment — but not always. 

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Citing Indi’s doctors, Justice Robert Peel’s original Oct. 13 order laid out details of the child’s condition at the time. 

“She has been on full life support for about a month, critically ill and extremely unstable. She is intubated, ventilated, with multi-organ support, and sedated. She has the highest level of intensive care support and shows no sign of recovery. Her conditions are untreatable,” Peel wrote. 

“It is of note that whereas her previous intubations lasted three to four days, this one has lasted a month, indicating the extent of her deterioration. Sadly, she is not, as the parents suggest, showing signs of improvement. There is no doubt in my mind that her presentation is on a rapid downward trajectory. She is now at the very limits of what is medically achievable for her.”

Indi’s parents, Dean Gregory and Claire Staniforth, disagreed with the doctors’ assessment that their child had shown no improvement. They insisted that Indi was responding to their touch and was happy when she was with her parents. 

Later that month, the British advocacy group Christian Concern, which represented Indi’s parents, laid out the treatment plan they say they received from Tiziano Onesti, president of the Bambino Gesù Hospital, which included some experimental therapies.

“Two medical experts, a cardiologist and a medical geneticist, [a] pediatrician and an expert in mitochondrial disorders, have now provided opinion on the treatment Indi can receive, which is backed by the Italian hospital,” Christian Concern stated.

“One of the expert’s analysis, who cannot be named due to reporting restrictions, shows that Indi’s breathing problems are likely to be caused by her treatable heart condition, known as Tetralogy of Fallot, rather than — as previously thought — by brain damage from the mitochondrial disease.”

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According to the statement, the unnamed expert said the problem can be fixed without surgery by inserting a catheter known as a “right ventricular outflow tract stent” through one of the vessels in Indi’s groin. The expert said that the treatment would “more likely than not” enable Indi to survive without artificial ventilation.

‘Final cruel twist’ 

In the final order Nov. 10, the U.K. judges ruled that the attempted Italian intervention in Indi’s case is “wholly misconceived” and “not in the spirit” of the 1996 Hague Convention, to which both the U.K. and Italy are parties and which Italian officials had appealed to as a basis for allowing Indi to be transferred to Italy.  

“The court will not tolerate manipulative litigation tactics designed to frustrate orders that have been made after anxious consideration in the interests of children, interests that are always central to these grave decisions,” the order reads. 

In his recent statement, Jones lamented the fact that the U.K.’s court system allows judges to “take this responsibility away from parents peremptorily… an injustice not only to them but also to children who have the right to be cared for by their parents.” He called the court’s decision to insist that Indi die in a clinical setting rather than at home a “final cruel twist.”

A hospital trust, in almost all disputed cases, is at a massive advantage, Jones noted, mainly because it has access to all the child’s medical information, as well as vast financial resources — in 2021, Nottingham University Hospitals NHS Trust had an annual budget of £1.3 billion ($1.6 billion), he said in his statement, while the Gregory parents are reliant on legal aid.