The parents of a baby with an incurable condition have begun a High Court battle over the treatment the six-month-old can receive.
Hospital bosses in Nottingham want a High Court judge to rule that doctors can lawfully limit treatment provided to Indi Gregory.
She has mitochondrial disease, a complex genetic disorder that saps energy from the body’s cells.
The same condition affected baby Charlie Gard, who died in 2017 after his parents lost a High Court battle to take him abroad for pioneering treatment.
Indi is currently receiving treatment on the paediatric intensive care unit at the Queen’s Medical Centre in Nottingham.
But her parents and medics disagree on whether “life-sustaining” treatment should continue.
A preliminary hearing in the Family Division of the High Court, in central London, took place on Friday.
Nottingham University NHS Foundation Trust believe it is not in Indi’s best interests to continue “invasive” treatment, with barrister Emma Sutton KC, who led the trust’s legal team, telling the judge the six-month-old was “critically” ill.
“Since her birth, Indi has required intensive medical treatment to meet her complex needs,” she said.
“The case relates to the most difficult of issues, namely whether life-sustaining treatment for Indi should continue.
“The court is asked to make that decision because Indi’s parents and those treating her cannot agree.”
She added: “The trust seek a declaration that in the event Indi again deteriorates to a point where medical care and treatment is required to sustain her life, 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.
“The trust also seek a declaration that it is lawful and in Indi’s best interests to be cared for in accordance with the compassionate care plan and such other treatment and nursing care as her treating clinicians in their judgment consider clinically appropriate to ensure that Indi suffers the least pain and distress and retains the greatest dignity.”
Hospital bosses say there should be an agreed “ceiling of care”.
But, her parents, Dean Gregory and Claire Staniforth, say she is responsive and can “experience happiness”, arguing she “deserves a chance at life”.
Mr Gregory said after the hearing: “We are just ordinary people and have been plunged into this complete nightmare.”
A specialist, who cannot be named, told the judge that Indi could not be helped by “the best of modern medicine”.
He said in a written statement that “every intervention” was adding to her burden.
Indi, who was born in February, also has a hole in her heart and had operations on her bowel and skull to drain fluid after her birth.
Mr Justice Peel told Mr Gregory that Indi is his “number one priority” and added: “It is all about her interests.”
Mr Gregory was not represented by lawyers at the hearing.
The judge said he should be given time to find legal representation and aimed to reconsider the case on 27 September.
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Mr Gregory has also launched a GoFundMe page to help pay for the legal battle for their “brave, beautiful daughter”.
The “proud father” wrote: “We are doing what’s in the best interest of Indi, not what’s in the best interest of the system.
“We have hope and we are fighting as any other parent would.”
It is the latest case in high profile court battles between medics and parents who disagree over the care of children, including Archie Battersbee, Alfie Evans, Alta Fixsler and Tafida Raqeeb.
