Critically ill baby’s parents begin life support treatment fight

Six-month-old Indi Gregory is in intensive care at a paediatric unit in Nottingham.

Indi’s father Dean Gregory, 37, from Ilkeston in Derbyshire, was in court (Victoria Jones/PA) (PA Wire)

The parents of a critically ill six-month-old baby have begun a High Court life support treatment fight.

A High Court judge on Friday began overseeing a preliminary private hearing in the Family Division of the High Court in London after hospital bosses asked him to decide what moves were in the best interests of six-month-old Indi Gregory.

Mr Justice Peel, who heard that Indi was being treated in paediatric intensive care at the Queen’s Medical Centre in Nottingham, said he was considering preliminary issues and would make final decisions after a further hearing.

Indi’s parents want treatment to continue. The girl has mitochondrial disease, a genetic condition that saps energy from the body’s cells.

Her father, Dean Gregory, 37, from Ilkeston, Derbyshire, was at the hearing.

The judge was told that Indi’s mother, Claire Staniforth, was with the little girl at hospital.

Bosses at Nottingham University Hospitals NHS Foundation Trust, who have responsibility for Indi’s care, have asked the judge to make decisions and begun litigation.

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 and is currently a patient on the paediatric intensive care unit within Queen’s Medical Centre, Nottingham,” said Ms Sutton.

“The case relates to the most difficult of issues, namely whether life-sustaining treatment for Indi should continue.

Sadly, patients who present at birth with this disorder have a life expectancy of a matter of months

Barrister Emma Sutton KC

“The court is asked to make that decision because Indi’s parents and those treating her cannot agree.”

Ms Sutton said Indi has a “devastating neurometabolic disorder” which is “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.

“Sadly, patients who present at birth with this disorder have a life expectancy of a matter of months.”

She added: “The trust seek a declaration that in the event Indi again deteriorates to a point where medical care and treatment is required to sustain her life, that it is not in Indi’s best interests to receive any critical care or painful interventions, and it is lawful for her treating clinicians to withhold the same.

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

“The trust also seek a declaration that it is lawful and in Indi’s best interests to be cared for in accordance with the compassionate care plan and such other treatment and nursing care as her treating clinicians in their judgment consider clinically appropriate to ensure that Indi suffers the least pain and distress and retains the greatest dignity.”

Ms Sutton continued: “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.

It is all about her interests

Mr Justice Peel

“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.

“This can occur in hospital, in a hospice or at home.”

Mr Justice Peel told Mr Gregory that Indi is his “number one priority” and added: “It is all about her interests.”

Mr Gregory was not represented by lawyers at the hearing.

The judge said he should be given time to find legal representation and aimed to reconsider the case on September 27.