Nottingham University Hospitals NHS Trust resisted plans that would allow the parents of Indi Gregory to take their daughter for specialist treatment at 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 was put forward by medical experts. The Italian government offered to fully-fund the treatment.
The Trust, however, maintained that it was in Indi’s ‘best interests’ to die, and threatened to proceed with removing her life-support despite the Italian offer and a pending urgent hearing.
The threat caused significant distress to Mr Gregory and his family as the previous ruling by the High Court makes it clear that it is for the parents to choose whether the removal of life-support takes place in the Hospital, hospice or at home.
Furthermore, any removal of life-support can only proceed strictly in accordance with the Care Plan and the Court’s Order.
A clinician, however, said to Mr Gregory: ‘We need to proceed with extubating her and we need to do it this afternoon. We have to extubate her this afternoon.’
Before the hospital’s threat could materialise, however, it was confirmed that there would be an urgent hearing before Family Division judge, Justice Robert Peel, at 2pm on 31 October, to decide whether Indi’s parents will be given permission to transfer her to Italy.
The hearing will not be in-person and the media can access proceedings via a CVP link which can be obtained from the Family Division at the High Court.
Responding to developments, Mr Gregory said:
“The pressure and distress my family and I are being put under is unbearable and feels inhumane. How can it be in Indi’s ‘best interests’ to die when she has a fully-funded offer from a leading paediatric hospital in Italy? We are concerned that the hospital now does not want to lose face and is determined no matter what for Indi’s life to end.
“We face no alternative but to go before a judge again and to beg for Indi to be allowed a chance to continue her life.
“We begged doctors at the Queen’s Medical Centre and the lawyers representing the Trust to work with Indi and us so secure her transfer to Rome, but they have refused.
“We have been given a real chance by the Bambino Gesù Paediatric Hospital for Indi to get the care she needs and to have a longer life. We are amazed and truly grateful to the hospital and the Italian government, which has restored our faith in humanity.
“Indi deserves the chance for a longer life. We cannot force the NHS and courts in this country to care for Indi but together we can give her a chance with a truly amazing treatment plan in Italy. We hope and pray Mr Justice Robert Peel will do the right thing.”
The letter from Italy
The letter received by Mr Gregory 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.”
The battle to keep Indi alive
Being treated at the Queen’s Medical Centre in Nottingham since she was born in February 2023, 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.
The eight-month-old girl 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 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.
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 be allowed to transfer her to Rome.
Two medical experts; a cardiologist, and a medical geneticist, paediatrician and expert in mitochondrial disorders, provided opinion on the treatment Indi can receive, which is backed by the Italian hospital.
One of the expert’s analysis, who cannot be named due to reporting restrictions, 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.
He 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, 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 decide whether it is in Indi’s ‘best interests’ to die or be transferred to Italy.
Find out more about Indi Gregory