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The Guardian - UK
The Guardian - UK
National
Josh Halliday North of England correspondent

Indi Gregory, baby girl at centre of legal battle, dies after life support removed

Indi Gregory
Indi Gregory had an incurable mitochondrial condition and medics said they could do no more for her. Photograph: Family Handout/PA

A critically ill baby girl at the centre of a legal battle has died after her life support was removed, her father has said.

Eight-month-old Indi Gregory had an incurable mitochondrial condition and medics said they could do no more for her. Her parents, Dean Gregory and Claire Staniforth, wanted specialists to keep treating her but have lost fights in the high court and court of appeal in London.

Gregory said on Monday that the infant had died in her mother’s arms shortly before 2am on Monday, hours after she was taken to a hospice where her life support was removed. He said they were both “heartbroken and ashamed” and added: “The NHS 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.

“They did succeed in taking Indi’s body and dignity, but they can never take her soul. They tried to get rid of Indi without anybody knowing, but we made sure she would be remembered forever. I knew she was special from the day she was born.”

Indi’s case is the latest high-profile end-of-life hearing to reach the Royal Courts of Justice, following similarly fraught battles over the treatment of children including Archie Battersbee, Charlie Gard, Alfie Evans, Isaiah Haastrup, Tafida Raqeeb and Alta Fixsler.

The infant, from Ilkeston in Derbyshire, was last week granted emergency Italian citizenship by the country’s prime minister, Giorgia Meloni, as part of an extraordinary last-minute attempt to have her flown to Rome for treatment. However, judges said a move to Italy was not in Indi’s best interests and called an intervention by Italian consular officials “wholly misconceived”.

On Friday, three appeal court judges ruled that life support treatment could be withdrawn only in a hospital or hospice, not at the family home.

Christian Concern, a campaigning group acting for the parents, said on Monday the judges had “denied Indi’s parents their final wish” by ordering that her life support could not be removed at home. It said the baby girl was taken from the Queen’s Medical Centre to a hospice with a security escort and a police presence, then was provided with “invasive ventilation” after her life support was removed. She died at 1.45am on Monday, the group said.

Pope Francis said he was praying for Indi’s family in a statement released by the Vatican on Saturday. It said the pope “embraces the family of little Indi Gregory, her father and mother, prays for them and for her, and turns 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 was born on 24 February with mitochondrial disease, a genetic condition that the NHS says is incurable. Specialists from the Queen’s Medical Centre said she was dying and that the treatment she was receiving caused pain and was futile. Her parents disagreed.

A high court judge, Mr Justice Peel, had ruled that limiting treatment would be lawful and that doing so would be in Indi’s best interests. Her parents failed to persuade judges at the court of appeal and at the European court of human rights in Strasbourg, France, to overturn that decision.

Last Monday, Indi was granted emergency Italian citizenship less than an hour before medical staff were due to withdraw life support treatment. The appeal court judge, Lord Justice Peter Jackson, on Friday expressed “profound concern” about aspects of the case brought by the Christian Legal Centre on behalf of Indi’s parents.

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