A critically ill baby girl at the centre of a life-support treatment fight cannot be helped by “the best of modern medicine”, a specialist has told a High Court judge.
The doctor told Mr Justice Peel that “every intervention” was adding to six-month-old Indi Gregory’s burden.
He 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”.
The specialist, who cannot be named, outlined his views in a written witness statement as Mr Justice Peel began examining Indi’s case at a private hearing in the Family Division of the High Court in London on Friday.
There are situations where the best of modern medicine is unable to help, and this is such a situation— Specialist
Indi’s parents want treatment to continue and the judge is expected to decide what moves are in her best interests in the next few weeks.
He is due to reconsider the case at a hearing on September 27.
“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 father Dean Gregory, 37, from Ilkeston, Derbyshire, was at Friday’s hearing.
The judge was told that Indi’s mother, Claire Staniforth, 35, was with the little girl at hospital.
Mr Justice Peel told Mr Gregory that Indi was his “number one priority”.
Mr Gregory was not represented by lawyers at the hearing.
The judge said Indi’s parents should be given time to find legal representation.
Bosses at Nottingham University Hospitals NHS Foundation Trust, who have responsibility for Indi’s care, have asked the judge to make decisions.
They want the judge to rule that specialists can lawfully limit treatment.
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”.
“Indi’s case is extremely complex and … her care must be seen in the context of her known prognosis, which has metabolic, neurological and cardiological aspects, as well as her overall stability,” she added.
“Sadly, patients who present at birth with this disorder have a life expectancy of a matter of months.”
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”.
Whilst further invasive treatment may, for a short time, prolong Indi's life, it will not improve its quality and will cause her further pain and unnecessary suffering— Barrister Emma Sutton KC
Ms Sutton added: “In this case, the trust submit that a ceiling of care is appropriate and that further forms of aggressive and invasive treatment are not in Indi’s best interests, whilst recognising that this would likely result in the shortening of her life.
“Although tragic, the trust say that the medical evidence is clear and is supported by second opinion evidence.
“Whilst further invasive treatment may, for a short time, prolong Indi’s life, it will not improve its quality and will cause her further pain and unnecessary suffering.
“The proposed care plan provides a level of treatment limited to ensuring that Indi’s death is as comfortable, pain-free and peaceful as possible.”
The judge 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.
Mr Justice Peel raised concern about the fact that Indi’s parents were not legally represented.
We are just ordinary people and have been plunged into this complete nightmare— Dean Gregory, Indi's father
Mr Gregory said, after Friday’s hearing, that they needed help.
“We are just ordinary people and have been plunged into this complete nightmare,” said Mr Gregory.
“We don’t have a lawyer but we would desperately love to have one.”
He added: “We cannot afford to hire the lawyers we need to match the legal firepower of the hospital.”
Indi’s parents, in work in the pharmaceuticals industry, have launched an online GoFundMe appeal – more than £1,500 has been pledged.
“We have hope and we are fighting as any other parent would,” he 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.”
Dr Keith Girling, medical director at the trust, said after the hearing: “Firstly, our thoughts are with Indi’s family on what has been a difficult day.
“Following today’s court hearing, our priority will remain to provide Indi specialised care and support her family as much as we can.
“Cases like this are incredibly difficult for everyone involved and we are of course saddened that we are unable to do more for Indi, but we will always act in the best interests of our patients and do all we can to advocate for them when needed.”
