The parents of a critically ill baby girl have asked a British judge to prevent medics from ending her life support after the hospital applied to the High Court to end her treatment, saying it can do no more for her.
Six-month-old Indi Gregory has incurable mitochondrial disease and is a patient at the Queen’s Medical Centre (QMC) in Nottingham.
Her parents were devastated by the application from the Nottingham University Hospitals (NUH) NHS Trust, saying their daughter deserved a chance at life. But the trust said the decision was in the baby’s “best interests”.
BBC News reports that at the court last week, Indi’s father, Dean Gregory, asked Mr Justice Peel to refuse the application.
Barrister Emma Sutton KC, who led the trust’s legal team, told the judge that since birth, the terminally ill baby has required intensive medical treatment to meet her complex needs.
“The case relates to the most difficult of issues, namely whether life-sustaining treatment for Indi should continue,” she said.
“The court is asked to make that decision because Indi’s parents and those treating her cannot agree.”
Sutton said Indi had “devastating neurometabolic disorder”, which is “exceptionally rare”, and her case was extremely complex.
‘Unnecessary suffering’
“Sadly, patients who present at birth with this disorder have a life expectancy of a matter of months.
“The trust seeks a declaration that if Indi again deteriorates to a point where medical care and treatment are 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 seeks a declaration that it is lawful and in her 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 she suffers the least pain and distress and retains the greatest dignity.”
She added that although tragic, the trust said the medical evidence was clear and was supported by second opinion evidence.
She said the trust had prepared a care plan to make Indi’s death “as comfortable, pain-free and peaceful as possible”.
The baby’s father told the BBC that he and his partner were devastated by the application, which he described as “disgraceful”.
“She’s disabled but she doesn’t deserve to be discriminated against. It’s not their (the trust’s) child…We see her progress and she’s a happy girl.”
The judge adjourned the case to allow Gregory to seek legal representation.
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.
BBC article – Judge to decide on ending critically ill baby girl's life support (Open access)
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