Ill baby’s parents say ‘right’ to end treatment at home has been removed

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The parents of a critically ill baby girl who has been at the centre of a life-support fight feel that their “right” to end treatment at home has been removed, appeal judges have been told.

Dean Gregory and Claire Staniforth want specialists to withdraw treatment from eight-month-old Indi Gregory at their home in Ilkeston, Derbyshire.

Specialists caring for Indi at the Queen’s Medical Centre in Nottingham say treatment should be withdrawn in a hospice or hospital.

A High Court judge has ruled against Indi’s parents, who are both in their 30s, and concluded that withdrawing treatment at home would be “too dangerous”.

Indi’s parents have challenged that ruling by Mr Justice Peel, and three Court of Appeal judges, based in London, are considering arguments at an online appeal hearing.

Barrister Bruno Quintavalle, who represented Mr Gregory at the appeal hearing, told Lady Justice King, Lord Justice Moylan and Lord Justice Peter Jackson that Mr Justice Peel had originally made an order saying Indi’s parents could decide whether “extubation” would take place at home, in a hospital or in a hospice.

He said, in a written case outline, that Mr Justice Peel had “amended” that order.

“The effect of the amendment is to remove the parents’ right to take Indi home for extubation,” Mr Quintavalle told the three appeal judges.

“The option of a transfer to home for extubation had been one of the options offered to the family by the doctors, then chosen by the family.”

He argued that there was an “obligation” to “provide it”.

Mr Justice Peel had considered arguments relating to Indi’s end-of-life care at a private online hearing in the Family Division of the High Court.

The judge, who is based in London, said he accepted the evidence of specialists.

Indi’s parents want specialists to keep providing life-support treatment.

But Mr Justice Peel has already ruled that specialists can lawfully limit treatment.

He has concluded that such a move would be in Indi’s best interests.

Indi’s parents have failed to persuade Court of Appeal judges and judges at the European Court of Human Rights in Strasbourg, France, to overturn that treatment decision.

Mr Quintavalle told appeal judges on Friday: “While the original substantive dispute is now over, this new decision comes as an equally devastating blow to the parents.”

Judges have heard that Indi, who was born on February 24, has mitochondrial disease – a genetic condition that saps energy.

Specialists say she is dying and bosses at the hospital asked for a ruling that doctors could lawfully limit treatment.

Medics say the treatment Indi receives causes pain and is futile.

Her parents disagree.

Mr Justice Peel has considered evidence at private hearings in the Family Division of the High Court in London.

He has allowed journalists to attend and says Indi can be identified in reports.