Indi Gregory: Judge to make life or death ruling on transfer to specialist Italian hospital, 10.30am Thursday
1 November 2023 Issued by: Christian ConcernAt 10.30am tomorrow morning, Thursday 2 November, Mr Justice Robert Peel will make a life or death ruling on whether it is in 8-month-old baby, Indi Gregory’s, ‘best interests’ to receive specialist treatment in Italy or have her life-support removed in the UK.
On Monday, 30 October, Nottingham University Hospitals NHS Trust resisted plans that would allow Indi’s parents to take her to a leading paediatric hospital in Italy.
It was revealed that the Bambino Gesù Paediatric Hospital in Rome had agreed to accept Indi for treatment and to carry out the right ventricular outflow tract stent procedure that has been put forward by medical experts. The Italian government has offered to fund the treatment.
The Trust, however, still maintains that it is in Indi’s ‘best interests’ to die, and earlier this week even threatened to proceed with removing her life-support despite the Italian offer and a pending urgent hearing.
Supported by the Christian Legal Centre, lawyers representing the family argued at yesterday’s hearing in London, that denying the family the right to move their child would be a breach of Indi’s Article 5 rights under the European Convention of Human Rights (ECHR.)
Article 5 of provides that everyone has the right to liberty and security of person.
The family’s lawyers argued that: ‘The Trust’s present intransigence and refusal to cooperate in the move of Indi to Rome would appear to constitute a breach of Indi’s Article 5 rights as exercised by her parents.’
Lawyers concluded arguments by stating: “The Court is respectfully asked to make the Order sought so that Indi can move her medical care to a new hospital, who whilst putting her best interests first is prepared to treat her in respect of the existing determinations of the court but subject to the prior provision of the ventricular stent.”
Justice Peel was also provided expert evidence from an Air Ambulance specialist.
During proceedings, Justice Peel asked to see the latest videos of Indi in hospital and was urged by lawyers to consider the new expert evidence from a cardiologist and medical geneticist, paediatrician and an expert in mitochondrial disorders.
The experts provided medical opinion on the treatment Indi can receive, which is backed by the Italian hospital.
‘The only alternative to death’
Awaiting the ruling tomorrow, Mr Gregory said: “We wish to take this offer because the only alternative offered by the Trust is Indi’s death.
“The expert medical opinions show a way of treating Indi which they say is likely to save her life and make her better, yet the Trust has angrily refused to consider it.
“Claire and I want to give our daughter every chance to survive and to improve, and it is very disturbing that Indi’s current treating clinicians have shown no interest in a realistic way forward which has been proposed by their colleagues.
“We have been given a real chance by the Bambino Gesù Paediatric Hospital which we want to take for our daughter.
“Even if the transfer to Italy involves some risk, the only alternative we have been offered in the UK is to go along with Indi’s death. There is nothing to lose for us or for Indi.
“The offer from Italy is the only offer of treatment that we have, and as Indi’s parents, we are prepared to take a risk to make that happen. It is much more important to us to give her a chance to survive than to organise her death in a more ‘pleasant’ environment than an air ambulance.
“Given that the medical evidence suggests she has a reasonable chance to survive and to improve, we believe it is in her best interests to be given that chance.”
Andrea Williams, chief executive of the Christian Legal Centre, said: “There is a hospital prepared to care for Indi in Rome. Indi’s parents desire to give her every chance they can. Why would anyone try to stop this happening for them and for her?
“We hope and pray for wisdom and courage for Mr Justice Peel as he deliberates on whether to allow Dean and Claire to transfer Indi to Rome where she can receive treatment from a leading hospital in paediatrics that wants to care for her. To deny them this opportunity would be unimaginable and unjust.
“We stand with the family as they continue to fight courageously for their precious daughter’s life.”
The letter from Italy
The letter received by Mr Gregory on Sunday night from Mr Tiziano Onesti, the President of the Hospital offering treatment, said:
“We write to confirm that we are prepared to accept your daughter Indi Gregory, born 24 February 2023, for treatment at Bambino Gesu Children Hospital, Rome, with immediate effect. We have received confirmation from the Government of Italy that it will assume responsibility for the funding of Indi’s treatment at Bambino Gesu Children Hospital.
“We have reviewed Indi’s medical records file and are currently preparing a detailed treatment plan for Indi with multidisciplinary input from doctors at Bambino Gesu Children Hospital.
“In outline, we envisage that Indi’s treatment plan will include: 1. A right ventricular outflow tract stent to manage her cardiological condition; 2. Continuation of experimental treatments for D2,L2 hydroxyglutaric aciduria (phenylbutyrate therapy, citrate therapy and ketogenic diet); 3. Life-sustaining treatment and palliative care to ensure Indi’s survival and comfort while the treatments take effect.
“It will be the family’s responsibility to organise and fund the air ambulance transfer of Indi from Nottingham to Rome.”
Legal battle
Being treated at the Queen’s Medical Centre in Nottingham since she was born in February 2022, Indi’s father, Dean Gregory, from Derbyshire, has been locked in a legal battle with Nottingham University Hospitals NHS Trust who have argued that life-saving treatment for Indi in this country should end.
Indi is battling a rare mitochondrial disease and her parents have maintained that despite her disability, she is a happy baby who responds to their touch. They say there is also evidence of improvement in her condition.
Supported by the Christian Legal Centre, Mr Gregory and his legal team has argued in court that the hospital has given a pessimistic outlook of Indi’s condition and that they have been denied the right to bring expert evidence to proceedings to support their position that her condition is improving and deserving of further treatment.
Last week the Court of Appeal upheld a ruling by High Court judge, Justice Robert Peel, that it is in the ‘best interests’, of Indi to die. Having exhausted all domestic legal remedies, Mr Gregory then lodged a last-ditch appeal to the European Court of Human Rights (ECHR) who quickly refused to hear the families’ case.
The stay, which had been given until 4pm on Friday 27 October expired and meant the Trust was not legally obliged to continue providing life-support. However, following an urgent meeting, the Trust gave Indi’s family until Monday 30 October to make arrangements to move Indi to a hospice.
With the offer from Italy secured, lawyers went back to the Trust on 30 October to request that Indi’s parents are allowed to transfer her to Rome.
Two medical experts provided analysis which shows that Indi’s breathing problems are likely to be caused by her treatable heart condition, known as Tetralogy of Fallot, rather than – as previously thought – by brain damage from the mitochondrial disease.
Experts pointed out that the problem can be fixed without a surgery by inserting a catheter known as “right ventricular outflow tract stent” through one of the vessels in Indi’s groin. The expert says that the treatment would “more likely than not” enable Indi to survive without artificial ventilation.
However, last week when presented with the evidence the Trust’s lawyers brushed it aside, threatened legal costs and sought to rush through removing Indi’s life support.
With the news from Italy and further expert evidence, however, the parents’ lawyers wrote to the Trust saying:
“Given that a leading paediatric hospital is now prepared to provide treatment to Indi which, according to the opinions of reputable medical experts, is likely to lead to a significant improvement in her condition, our client wishes to organise Indi’s transfer to Rome as soon as possible. We anticipate no reason why your client might want to stand in the way of such a transfer, and hope your client will cooperate with the air ambulance company to organise it.
“Indi’s transfer to Rome does not necessarily require a variation of the Order of Mr Justice Peel. As the Judge emphasised at the hearing, the effect of the declaratory order is permissive, not prescriptive or prohibitive.”
Trust lawyers, however, resisted saying: ‘There is no new material information and the plan endorsed by the High Court is being followed.’
It will now be down to Mr Justice Peel to rule on whether it is Indi’s ‘best interests’ to be moved to Italy or to be moved to a hospice to die.
