Survival of 4-year-old after life support switched off raises ‘challenging questions’ over court interventions

The remarkable survival of a 4-year-old boy who was expected to die shortly after his life support was removed has not only “confounded” medical expectations but raised “challenging questions” about how the courts intervene in disagreements between doctors and parents over the treatment of ill children.

Months before, the BBC reports, the High Court ruled that life-sustaining ventilation was not in the best interest of the child – referred to as NR in court records – after hearing evidence from doctors treating him. The boy was born with severe brain abnormalities and his health was deteriorating.

The judge ruling in the latest case to lift previous declarations that would have allowed doctors to withhold CPR or not provide certain treatments to the boy – NR still has significant medical challenges – has praised the “remarkable young boy” who “not only survived but has made progress” enough to be able to return and live at home with his parents.

The judge, Mr Justice Poole, said: “I do not wish to minimise the emotional turmoil suffered by Mr and Mrs R and the continuing burdens that NR suffers because of his conditions, but it seems to me to be a wonderful surprise that NR has confounded expectations, that he no longer requires continuing invasive interventions and, in particular, that he has been able to return home to the loving care of his devoted parents.”

The judge said that when orders about treatment were made in January 2024, NR was “suffering many more burdens” and there was “little to no evidence that he could derive pleasure from life, other than the consoling touch of his parents”.

However, Mr Justice Poole went on to say, the situation has changed: “Now he can be taken outside, for example to the park. He can enjoy the sun on his face and the feel of the wind in his hair. He is living in a loving home environment.”

Months after being taken off life support, NR is “breathing for himself”, and no longer uses a urinary catheter, the BBC reports.

The mother of NR told the court in a statement that her son had “earned a new start” and he “deserves it”.

Addressing moral concerns around such cases, Mr Justice Poole said: “A decision to withdraw life sustaining treatment is not a decision to bring about the death of a patient, but a decision that the continuation of the treatment is not in their best interests.”

NR’s case is the latest of a number of high-profile end-of-life hearings to reach the Royal Courts of Justice, after similarly disagreements between doctors and parents over life-saving treatment of children.

To that end, the judge said NR’s case was “highly unusual” and raised “challenging questions” for the court.

He noted that the counsel could not find a similar case in which a child had survived for months after life-sustaining treatment had been withdrawn due to a court decision.

Last year, the parents of a critically ill baby called Indi Gregory launched a number of legal challenges in a bid to save their daughter’s life.

The family tried to convince judges at the High Court, the Court of Appeal and then the European Court of Human Rights that Indi should continue to receive care. Indi died in November 2023 after her life support was turned off.

In another controversial end-of-life case, a patient branded “delusional” by doctors after she rejected their plan to end her life was exonerated by a court almost a year after she died.

Sudiksha Thirumalesh, a 19-year-old student, instructed her lawyers to get her out of the UK when doctors gave up hope that she would recover sufficiently, and decided to remove her from the ventilator that kept her alive.

She died last September shortly after the Court of Protection sided with doctors at University Hospitals Birmingham NHS Foundation Trust who wanted to put her on palliative care even though she told a treating psychiatrist: “I want to die trying to live…we have to try everything.”

The Court of Protection concluded that she did not have mental capacity to make her own decisions simply because she rejected the opinions of the doctors, arguing that her “complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain”.

Her parents, Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh, mounted a posthumous challenge to the decision and the Court of Appeal ruled earlier this summer that the lower court acted incorrectly.

Photo: The Royal Coat of Arms and signage is pictured on an external wall of the Royal Courts of Justice in central London, England, UK, 21 August 2016. The Royal Court of Justice building accommodates both the Court of Appeal and the High Court. Often referred to as The Law Courts, the building was designed by architect George Edmund Street in Gothic style and opened by Queen Victoria in 1882. (Photo by NIKLAS HALLE’N/AFP via Getty Images.)

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