The parents of a six-month-old baby with an incurable illness have begun a High Court legal battle to continue her treatment, despite hospital doctors arguing that it is not in her “best interests”.
Indi Gregory was born with mitochondrial disease, a rare genetic condition that prevents cells from producing enough energy to support the body.
Her parents, Claire Staniforth, 35, and Dean Gregory, 37, appeared at a court hearing on Friday to appeal the hospital’s decision not to provide another round of treatment.
Indi has not left hospital since she was born in February— (GoFundMe)
Doctors at the Nottingham University Hospitals NHS Trust have argued it is no longer in her best interests to receive treatment and it would be kinder to let her die.
Both of her parents however have said their baby daughter “deserves a chance at life” and have set up a GoFundMe page to raise money for the family’s legal battle.
At a preliminary hearing on Friday in the Family Division of the High Court in London, Mr Justice Peel was told that Indi was “critically” ill.
A doctor at the hearing said that Indi cannot be helped by “the best of modern medicine”. The specialist, who cannot be named, told Mr Justice Peel that “every intervention” was adding to six-month-old Indi Gregory’s burden. He said staff treating Indi were “truly saddened”.
Barrister Emma Sutton KC, who led the trust’s legal team, said: “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.
“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.”
Indi’s father Mr Gregory attended the hearing, while the judge heard that his partner remained at the infant’s bedside in hospital.
Ms Sutton continued: “In this case, the trust submit that a ceiling of care is appropriate and that further forms of aggressive and invasive treatment are not in Indi’s best interests, whilst recognising that this would likely result in the shortening of her life.
“Although tragic, the trust say that the medical evidence is clear and is supported by second opinion evidence.
Indi’s father Dean Gregory, from Ilkeston in Derbyshire, attended the hearing in London on Friday— (PA)
She argued that treatment would not improve Indi’s life and would only cause “further pain and unnecessary suffering”.
“The proposed care plan provides a level of treatment limited to ensuring that Indi’s death is as comfortable, pain-free and peaceful as possible,” she said. “This can occur in hospital, in a hospice or at home.”
Her parents have received support from the family of Charlie Gard, who died one week before his first birthday after suffering from the same disease.
His mother, Connie Yates, said it was “inhumane” that hospital bosses had sprung a court hearing upon Indi’s parents with only two days’ notice, with no opportunity for them to seek legal representation or second opinions.
Charlie’s case attracted widespread attention as his parents and Great Ormond Street Hospital disagreed about whether experimental treatment was in his best interests.
Meanwhile, Indi’s parents were left “absolutely devastated” to be informed that hospital chiefs were applying to the High Court to put their baby on an “end-of-life” plan.
Since being born in February, Indi has not left Queen’s Medical Centre in Nottingham and has endured a number of other health issues.
They include two bowel operations, a brain operation for fluid in the brain and sepsis ecoli which led to three cardiac arrests.
Indi’s parents believe she ‘deserves a chance at life’— (GoFundMe)
Despite this, her parents have described her as the “strongest little girl” who is able to communicate with baby noises and is able to move all of her limbs.
Her father told the Daily Mail: “Indi is a strong little girl and a real fighter. She deserves a chance at life. The hospital wants to take this away and we are beyond horrified. She just needs time to recover so we can work out a plan to care for her at home.
“We know she will never be the same as other children, because she has several disabilities. But it breaks our hearts to think that doctors don’t want to give her that chance at life."
Her grandfather, Michael Gregory, also said it should be up to Indi’s parents to decide the best course of action for their daughter.
“It is a very difficult situation,” he said. “It is one of those where you are caught between two almost impossible choices. But in my opinion, the courts shouldn’t decide these matters. It should be the parents.”
Since her birth, Ms Staniforth and Mr Gregory have kept a constant vigil at her bedside, alongside their other three daughters.
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.
