The father of a critically ill baby girl at the centre of a High Court life-support treatment fight has told of being “plunged” into a “nightmare”.
Hospital bosses in Nottingham want a High Court judge to rule that doctors can lawfully limit treatment provided to six-month-old Indi Gregory.
Mr Justice Peel oversaw a preliminary private hearing of Indi’s case in the Family Division of the High Court in London on Friday and is expected to make a decision late this month.
Indi’s parents Dean Gregory, 37, and Claire Staniforth, 35, from Ilkeston, Derbyshire, want treatment to continue.
Mr Gregory said after the hearing: “We are just ordinary people and have been plunged into this complete nightmare.”
A specialist, who cannot be named, told the judge that Indi could not be helped by “the best of modern medicine”.
He said in a written statement that “every intervention” was adding to her burden.
The doctor said staff treating Indi – who has a mitochondrial disease, a genetic condition that saps energy from the body’s cells – at the Queen’s Medical Centre in Nottingham were “truly saddened”.
“We are truly saddened that we are in this situation: it is our life’s work to make children better,” the specialist told the judge.
“However, there are situations where the best of modern medicine is unable to help, and this is such a situation.”
He added: “Every intervention is adding to the burden for Indi, and it is becoming increasingly difficult for the staff to justify these interventions.”
Indi’s parents were not represented by lawyers at the hearing, and Miss Staniforth was not in court.
The judge said they should be given time to find legal representation.
Outside court, Mr Gregory said that they needed help.
“We don’t have a lawyer but we would desperately love to have one,” added Mr Gregory, after the hearing.
“We cannot afford to hire the lawyers we need to match the legal firepower of the hospital.”
Bosses at Nottingham University Hospitals NHS Foundation Trust, who have responsibility for Indi’s care, have asked the judge to make decisions.
Barrister Emma Sutton KC, who led the trust’s legal team, told the judge that Indi was “critically” ill.
“Since her birth, Indi has required intensive medical treatment to meet her complex needs,” said Ms Sutton.
“The case relates to the most difficult of issues, namely whether life-sustaining treatment for Indi should continue.
“The court is asked to make that decision because Indi’s parents and those treating her cannot agree.”
Ms Sutton said Indi had a “devastating neurometabolic disorder” which was “exceptionally rare”.
The trust wants the judge to rule that if Indi “again deteriorates to a point where medical care and treatment is required to sustain her life”, it is not in her best interests to receive “critical care or painful interventions”.
Mr Justice Peel considered evidence in private but said journalists could attend the hearing and ruled that Indi, her parents, and the hospital could be named in reports.
He ruled that medics treating Indi – and a guardian appointed to represent her interests – could not be named.
Indi’s parents, in work in the pharmaceuticals industry, have launched an online GoFundMe appeal and more than £1,500 has been pledged.
“We have hope and we are fighting as any other parent would,” Mr Gregory said in a message on the appeal website.
“We are doing what’s in the best interest of Indi not what’s in the best interests of the system.”
Mr Gregory said: “All this that is happening to our brave, beautiful daughter is injustice.”