In a dramatic development, and just hours before 8-month-old baby Indi Gregory was due to have her life-support removed, a leading paediatric hospital in Italy swooped in to offer specialist treatment.
Fully-funded by the Italian government, the Bambino Gesù Paediatric Hospital, in Rome, 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 letter received by Mr Gregory, from Mr Tiziano Onesti, the President of the Hospital, 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.”
Up until the offer from Italy came in, Indi had been treated at the Queen’s Medical Centre in Nottingham since her birth in February 2023. Indi’s father, Dean Gregory, 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, but 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 have argued in court that the hospital has painted such a pessimistic outlook on Indi’s condition that has led to her being denied the right to bring expert evidence to proceedings to support their position.
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), which quickly refused to hear the families’ case.
However, the Trust gave Indi’s family until Monday 30 October to make arrangements to move Indi to a hospice.
With the incoming offer from Italy secured, Indi’s lawyers immediately went back to the Trust to request that her parents be allowed to transfer her to Rome.
Two medical experts, one a cardiologist, and the other a medical geneticist, paediatrician and expert in mitochondrial disorders, have now 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 this to the Trust:
“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.”
‘Work with us for Indi’
Responding to the news, Mr Gregory, who released this latest video of Indi over the weekend said: “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.
“We are now begging doctors at the Queen’s Medical Centre and the lawyers representing the Trust to work with Indi and us to secure her transfer to Rome.
“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 that the hospital and Trust will do the right thing and help us and Indi.”
Find out more about Indi Gregory