A UK judge has ruled that a baby girl born with a mitochondrial disease may be taken off life support due to the degenerative nature of her condition.
Last Friday, Mr. Justice Peel declared that seven-month-old Indi Gregory could be denied lifesaving treatment for her incurable illness, citing the “significant pain” she suffers, “a very short life span [and] minimal engagement with the world around her.”
Indi was born on February 24 with multiple irreversible conditions, including two hydroxyglutaric aciduria, which causes progressive brain damage, ventriculomegaly that traps spinal fluid in the brain ventricles and Tetralogy of Fallot, making up several heart defects.
Indi is in the care of Queen’s Medical Centre in Nottingham, which is part of the National Health Service (NHS) Trust. The Trust originally sought “declarations that it is not in IG’s best interests to receive various forms of invasive procedures (including mechanical ventilation, high flow oxygen therapy, line access and CPR)” on September 7.
Later, when such treatments were deemed necessary to keep Indi alive, the Trust applied for authorization “to remove critical care” on September 27, arguing that the treatment would cause “a high level of pain and suffering and there is no discernible quality of life or interaction by IG with the world around her.”
On Friday, October 13, Peel wrote in his ruling that he “[came] to the conclusion that the burdens of invasive treatment outweigh the benefits.” He detailed that the NHS Trust’s “care plan” would be permitted, which consists of “weaning her off intubation within one week and facilitating the use of a bag mask for up to a week after ex-tubation” and shifting to palliative care.
“I therefore grant the application, and make the declarations sought, with sorrow but on the basis that it is clearly in Indi’s best interests to do so,” Peel concluded.
Following the ruling, Dean Gregory, Indi’s father, said, “We are devastated by the judge’s ruling and will be appealing,” arguing that “the doctors painted a terribly bleak and negative picture of Indi’s condition during court proceedings.”
He also described the ruling as a “death sentence” for his little girl and clarified that the “misleading” statements left media to report “that Indi had to be resuscitated nine times in one day,” which he said was “completely untrue.”
“During her short life, Indi has proved everybody wrong and deserves more time and care from the NHS rather than seeking to end her life as soon as possible. It is criminal that parents who are trying to do everything for their child in such difficult circumstances are taken to court and have to contend with the weight of the whole system coming against them.”