A four-year-old boy who was expected to die shortly after his life support was removed has “confounded” medical expectations, a UK judge has said in a ruling.
Months before, the High Court ruled that life-sustaining ventilation was not in the child’s best interest, after hearing evidence from doctors treating him.
The boy, referred to as NR in court records, was born with severe brain abnormalities and his health was deteriorating.
The judge said the “remarkable young boy” had “not only survived but has made progress” and now lived at home with his parents.
The judge, Mr Justice Poole, has now lifted declarations which would have allowed doctors to withhold CPR or not provide certain treatments.
NR still has significant medical challenges.
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.”
He said that when some 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, 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.”
Mr Justice Poole said it was a “delight” to see pictures of the boy at home with his “devoted” parents.
Months after being taken off life support, NR is “breathing for himself”, and no longer uses a urinary catheter.
NR’s mother told the court in a statement that her son had “earned a new start” and he “deserves it”.
“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,” Mr Justice Poole said.
NR’s case is the latest high-profile end-of-life hearing to reach the Royal Courts of Justice, following similarly disagreements between doctors and parents over the treatment of children.
The judge said NR’s case was “highly unusual”, and raised “challenging questions” for the court.
He added the counsel could not find a similar case in which a child had survived for months after life-sustaining treatment had been withdrawn, following 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 prolong their daughter’s life.
The family tried to convince High Court, Court of Appeal and European Court of Human Rights judges that she should continue to receive care.
Indi died in November 2023 after her life support was turned off.
