Judge to decide on ending critically ill baby girl's life support

Indi Gregory was born with mitochondrial disease

The parents of a critically ill baby girl have asked a judge to prevent medics ending her life support.

Six-month-old Indi Gregory has mitochondrial disease and is being cared for at the Queen's Medical Centre (QMC) in Nottingham.

The hospital has applied to the High Court to end her treatment and has said it can do no more for her.

Her parents said they were devastated by the application and that their daughter deserved a chance at life.

Barrister Emma Sutton told the judge that Indi was "critically" ill

Indi's father Dean Gregory, 37, from Ilkeston in Derbyshire, attended the High Court in London on Friday.

He hopes to persuade Mr Justice Peel to refuse an application which Nottingham University Hospitals (NUH) NHS Trust said was in his daughter's "best interests".

The judge relaxed statutory restrictions covering private family court hearings and said Indi, her parents and the hospital involved could be named in media reports.

He was told Indi's mother Claire Staniforth, 35, had remained by her daughter's side in intensive care at the QMC where she has been treated for the rare genetic condition.

Mitochondrial disease prevents cells in the body producing energy and the NHS says the condition is incurable.

Indi has been undergoing treatment at the QMC in Nottingham

Barrister Emma Sutton KC, who led the trust's legal team, told the judge that Indi was "critically" ill.

"Since her birth, Indi has required intensive medical treatment to meet her complex needs and is currently a patient on the paediatric intensive care unit within Queen's Medical Centre, Nottingham," Ms Sutton 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."

Ms Sutton said Indi had "devastating neurometabolic disorder" which is "exceptionally rare" and her case was extremely complex.

'Unnecessary suffering'

She said: "Sadly, patients who present at birth with this disorder have a life expectancy of a matter of months.

"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."

Ms Sutton told the court: "Although tragic, the trust say that the medical evidence is clear and is supported by second opinion evidence.

"Whilst further invasive treatment may, for a short time, prolong Indi's life, it will not improve its quality and will cause her further pain and unnecessary suffering."

She said the trust had prepared a care plan to make Indi's death "as comfortable, pain-free and peaceful as possible".

Indi's parents posted this picture of her on their GoFundMe page as part of their dispute with the NHS trust

Mr Gregory told the BBC before Friday's hearing that he and his partner were devastated by the trust's application, which he described as "disgraceful".

He said: "She's disabled but she doesn't deserve to be discriminated against.

"It's not their [the trust's] child. They don't see how she is. We see her every day. We are with her every day.

"We see her progress and she's a happy girl."

During the hearing, Mr Justice Peel told Mr Gregory, Indi was his "number one priority" and added: "It is all about her interests."

He adjourned the case to allow Mr Gregory to seek legal representation.

'Extremely difficult case'

Indi's parents have started a fundraising page as part of their dispute with trust and supporters have so far donated more than £1,000.

In a statement, NUH's chief nurse Michelle Rhodes said: "We can confirm that the trust has made an application to the High Court to ensure that Indi's best interests can be protected."

"We wish to express our sympathies to Indi's family at this very difficult time.

"We know that this is an extremely difficult case for all involved and we continue to support Indi's family and provide specialised care for Indi.

"Cases like this are so difficult and we are of course saddened that we are unable to do more for Indi, but we will always act in the best interests of our patients and do all we can to advocate for them when needed."

The legal dispute echoes that of Charlie Gard who had encephalomyopathic mitochondrial DNA depletion syndrome and died in 2017 after a legal bid for experimental treatment was refused.