Critically ill baby Indi Gregory cannot be helped by 'best of modern medicine', judge told

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.

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."

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".

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.

Indi has the same condition that affected baby Charlie Gard who died in 2017. He was born on 4th August 2016 but soon diagnosed with this syndrome,

Charlie’s parents, Chris Gard and Connie Yates, were embroiled in a five-month legal battle with the hospital where their son was being treated, to gain permission to fly him to the US for experimental treatment.

They fought with doctors from Great Ormond Street Hospital. But the High Court ruled in favour of the hospital and said Charlie should be allowed to die with dignity and Charlie died on July 28, just days before his first birthday.

£1.3 million donated by well-wishers to set up a "Charlie Gard Foundation" aims to help children in similar situations - like Indi.

What is mitochondrial disease?

When a person has mitochondrial disease, the mitochondria in the cells are not producing enough energy. Sometimes they are not very efficient or they do not work at all.

The parts of the body commonly affected are those that have the highest energy demands, such as brain, muscle, liver, heart and kidney. When these systems are effected mitochondrial disease is usually progressive.

Every person with mitochondrial disease is affected differently. Each individual affected will have a different combination of mitochondria that are working and not working within each cell.

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