The father of an 8 month old girl fighting for her life in a Nottingham hospital calls the process his family has gone through in trying to save her "inhumane".
The Christian Legal Centre says Nottingham University Hospitals NHS Trust has rejected 'last-ditch' evidence from a cardiologist providing expert opinion that Indi Gregory “more likely than not” can live without a ventilator.
It follows a decision on Thursday afternoon, that the European Court of Human Rights had refused to consider the case.
Indi's family say they were prevented from providing expert evidence on Indi's condition in court, in part because medical evidence from the medical team caring for her was found to be comprehensive. A judge also acknowledged that the timeline for making a decision was short, because of the child's condition.
The eight-month-old girl is battling a rare mitochondrial disease but her parents say that despite her disability she is a happy baby who responds to their touch. They said because of the legal battle, they made the decision to have her baptised and are praying for God to protect her.
Proceedings on the case were delayed for several days while the family secured legal advice. A high court judge reminded the court that public funding is now available to parents of children like Indi on a non-means tested basis following a recent change in UK law, which he said was a welcome development.
Nevertheless, on 13th October, Justice Robert Peel said it was "with a heavy heart", that after considering unanimous medical evidence he had come to the conclusion that "the significant pain experienced by this lovely little girl is not justified when set against an incurable set of conditions, a very short life span, no prospect of recovery and, at best, minimal engagement with the world around her."
Lawyers argued that the Trust had been allowed to provide expert opinion evidence, without having any formal permission to do so or being instructed as experts, and yet during High Court proceedings refused to allow Mr Gregory to do the same.
Supported by the Christian Legal Centre, the family later submitted evidence from an expert cardiologist to the European Court of Human Rights, which they say proved that Indi’s breathing problems are likely to be caused by her treatable heart condition, rather than – as previously thought - by brain damage from the untreatable mitochondrial condition she was born with. According to the CLC, the expert - who can't be named because of legal restrictions - said it's a problem that can be fixed without surgery, using a catheter into Indi's heart, and that the treatment would “more likely than not” enable Indi to survive without artificial ventilation.
Indi's mother preferred to remain at her daughter's bedside throughout the proceedings, so Mr Gregory attended the hearings on behalf of the family.
He released the latest video of Indi and said: “It has been an almost impossible task to challenge and expose this cruel system that has been so determined to end the life of Indi. I have done everything I can to protect and save her life."
He continued: "We want to thank our legal team and everyone who has been supporting us. We hope that other families who come up against this system will be encouraged to do so and to do it before reporting restrictions are put in place. What happens to families in these situations must be exposed and lasting change is needed so that families do not have to go through this inhumane process."
The family say they have now given up on the legal battle. They've asked the Trust to give them until Monday before removing life support.