A FOUR-year-old boy who was expected to die shortly after his life support was turned off has “confounded all medical expectations” by making a miraculous recovery.
The child, only known as NR, was born with a severe brain malformation and had been kept alive by the machines since Ocotber 2023, following two cardiac arrests.
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His parents lost a High Court bid against King’s College Hospital NHS Trust in April to send him to a hospital in Italy for further treatment.
Doctors at King’s College Hospital, however, said there was no prospect he would recover, predicting he’d survive for just a few days after treatment ended.
At the time, the judge ruled the boy should not be “forced to live” as the burden of his treatment “far far outweighed the benefits“.
But just a few months after Judge Nigel Poole ruled that life-sustaining ventilation was not in NR’s best interests and his life support machines were turned off, the little boy is still alive – and thriving.
Read more on life support
The “remarkable” boy “has not only survived but has made progress” after his ventilator was removed more than four months ago, the judge said in a ruling in September.
He is now miraculously breathing for himself and is able to live at home with his parents.
“The expectations that NR could not be cared for at home and would not survive long after extubation have not been fulfilled,” the judge said.
He also described the case as “highly unusual”, saying it raised “some challenging questions for the court which must be addressed openly and objectively”.
The judge’s ruling published this week said that he wasn’t aware of another reported case in which a child has survived for months after being taken off life-sustaining treatment following a court decision.
In his judgment, Mr Justice Poole reversed declarations which would have allowed doctors to withhold CPR or not provide certain treatments.
He said that when orders about treatment were made in January 2024, the child 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 judge continued: “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.”
He added that it was a “delight” to see pictures of the boy at home with his “devoted” parents, only known as Mr and Mrs R.
Mrs R told the High Court in a statement that her son’s will to live is “strong” and that he has a good life.
She said: “NR survived when the doctors and nurses who looked after him for months thought he could not.
“NR has earned a new start and he deserves it.”
The boy’s case follows a high-profile hearing at the Royal Courts of Justice over the treatment of eight-month-old Indi Gregory.
The critically ill baby tragically died after her life support was switched off in November last year, despite a desperate battle from her parents.
What is life-sustaining treatment and when is it withdrawn?
There are many different types of treatment that can be used to keep people with serious or terminal illnesses alive.
These are called life-sustaining treatments.
They include:
- Nutritional support through a feeding tube
- Dialysis – where a machine takes over the kidneys’ functions
- Ventilators – where a machine takes over breathing
Eventually, with terminal illness, there may come a time when it’s clear there’s no prospect of recovery and that life-sustaining treatments are prolonging the dying process.
Your healthcare team will discuss this with you if you’re able to understand and communicate.
If you’re not able to understand and communicate, and you have made an advance decision outlining the care you would refuse in these circumstances, your healthcare team will follow this.
If you haven’t made an advance decision, then a decision will be made based on what your best interests are believed to be.
Your healthcare team will discuss this with your family members and your lasting power of attorney (if you have one), giving them time to consider all the implications.
If there’s an agreement that continuing treatment is not in your best interests, treatment can be withdrawn.
Your healthcare team will make you as comfortable as possible during the dying process.
If an agreement cannot be reached, the case may need to be referred to the Court of Protection before any further action can be taken.
Source: NHS
Indi had mitochondrial disease, an incurable condition which drains energy from the body’s cells, as well as a hole in her heart.
She had operations on her bowel and skull soon after she was born in February 2023.
Her parents were left “angry and heartbroken” after losing a high court battle to keep their daughter on life support.
They argued at the High Court that their daughter had “proved everyone wrong” and “needed more time”.
But hospital bosses asked judges to rule they could lawfully limit treatment as keeping the “dying” baby on a ventilator would “prolong matters”.
The judge concluded with a “heavy heart” that medics could withdraw “invasive treatment”.
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