The parents of a six-month-old baby with a terminal illness have launched a High Court battle to continue her treatment, despite hospital doctors arguing it is not in their “best interests”.
Indi Gregory was born with life-threatening mitochondrial disease, a rare genetic disorder that prevents cells from producing enough energy to support the body.
Her parents, Claire Staniforth, 35, and Dean Gregory, 37, have now appeared at a court hearing to appeal the hospital’s decision not to carry out another round of treatment.
Doctors at Nottingham University Hospitals NHS Trust have argued that it is no longer in her best interests to receive treatment and that it would be kinder to let her die.
However, both parents said their young daughter “deserves a chance in life” and have set one up GoFundMe page to raise money for the family’s legal battle.
At a preliminary hearing at the Family Division of the High Court in London, Mr Justice Peel was told that Indi was “gravely” ill.
Lawyer Emma Sutton KC, who led the trust’s legal team, said: “Since birth, Indi has required intensive medical treatment to meet her complex needs and is currently a patient in the pediatric intensive care unit at Queen’s Medical Center in Nottingham,” said she Mrs. Sutton.
“The case concerns the most difficult issue, namely whether Indi should be continued on life support.
“The court is asked to make this decision because Indi’s parents and her guardians cannot reach an agreement.”
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 submits that a cap on care is appropriate and that further forms of aggressive and invasive treatment are not in Indi’s best interests, although it recognizes that this is likely to shorten her life would lead.
“Although tragic, the trust says the medical evidence is clear and supported by second opinion evidence.
She argued that the treatment would not improve Indi’s life and would only cause “further pain and unnecessary suffering.”
“The proposed plan of care provides a level of care limited to ensuring that Indi’s death is as comfortable, pain-free and peaceful as possible,” she said. “This can happen in the hospital, in hospice or at home.”
Her parents received support from the family of Charlie Gard, who died of the same illness a week before his first birthday.
His mother, Connie Yates, said it was “inhumane” that hospital bosses had forced a court hearing on Indi’s parents with just two days’ notice, without giving them the opportunity to seek legal advice or a second opinion.
Charlie’s case attracted widespread attention as his parents and Great Ormond Street Hospital disagreed over whether experimental treatment was in his best interests.
Meanwhile, Indi’s parents were “completely devastated” when they learned that hospital bosses were petitioning the Supreme Court to seek an “end-of-life plan” for their baby.
Since her birth in February, Indi has not left Queen’s Medical Center in Nottingham and has suffered from a number of other health problems.
These include two intestinal surgeries, brain surgery for fluid in the brain and sepsis ecoli that resulted in three cardiac arrests.
Despite this, her parents described her as the “strongest little girl,” able to communicate with baby sounds and move all her limbs.
Her father told the Daily Mail: “Indi is a strong little girl and a real fighter. She deserves a chance in life. The hospital wants to take that away from us and we are beyond horrified. She just needs time to recover so we can train a plan to care for her at home.
“We know she will never be like other children because she has multiple disabilities. But it breaks our hearts to think that the doctors don’t want to give her this 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’s a very difficult situation,” he said. “It’s one of those where you’re between two almost impossible decisions. But in my opinion the courts should not decide these matters. It should be the parents.”
Since her birth, Ms. Staniforth and Mr. Gregory, along with their other three daughters, have kept constant vigil at her bedside.
Mr Justice Peel told Mr Gregory that Indi was his “top priority”, adding: “It’s 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 would reconsider the case on September 27