The High Court has published a deeply sensitive judgment concerning the withdrawal of life-sustaining treatment for a young child with a severe and progressive genetic condition.
In Cardiff and Vale University Local Health Board v SR & Ors [2026] EWHC 348 (Fam), the court was asked to determine whether it was lawful and in the best interests of a child, known as TR, for invasive ventilation to be withdrawn.
TR had been diagnosed with Leigh Syndrome, a rare and fatal mitochondrial disorder causing irreversible brain damage, absence of cognitive awareness and complete ventilator dependence. Expert medical evidence before the court confirmed that there was no treatment capable of curing or slowing the progression of his condition.
The application was brought by the Cardiff and Vale University Local Health Board under the inherent jurisdiction of the High Court. The court’s role in such cases arises where a child lacks capacity to make decisions and there is disagreement between clinicians and those with parental responsibility. While there is a strong presumption in favour of preserving life, that presumption is rebuttable. The sole test for the court is whether the proposed course of action is in the child’s best interests, requiring a holistic assessment of welfare in its widest sense.
Both parents opposed the withdrawal of treatment and gave evidence before the court. They described their deep love for their only child and their belief that he showed signs of awareness and responsiveness. Their Muslim faith formed a central part of their position, and they told the court that life and death are determined by Allah. They questioned the certainty of the medical prognosis and maintained that continued treatment accorded with their son’s welfare and religious identity.
The case raised profound questions at the intersection of medical ethics, parental rights and religious belief.
In his judgment, Mr Justice Garrido carefully reviewed the extensive expert evidence and accepted that TR had sustained irreversible brain damage, had no cognitive awareness and was in the terminal phase of a progressive and fatal illness. Although the court acknowledged the parents’ sincere beliefs and devotion, it concluded that continued invasive ventilation was burdensome and carried significant risks, without any prospect of recovery or improvement.
The court declared that it was not in TR’s best interests for life-sustaining treatment to continue and approved the implementation of a palliative care plan.
Kathy Walker, director in the Family & Child Care team at Duncan Lewis Solicitors and a public law children specialist with more than 20 years’ experience in complex and sensitive proceedings involving serious medical and welfare issues, represented TR’s father in the proceedings. “These are some of the most emotionally difficult cases the court is ever asked to decide,” she said.
“The parents’ love and faith were central to the evidence before the court, and their devotion to their son was clear throughout.
“The legal framework requires the court to undertake an objective and holistic assessment of the child’s welfare. That is an extraordinarily heavy responsibility in circumstances like these.”
She added:
“Our role is to ensure that parents’ voices are properly heard and that the court has the fullest possible understanding of their position when making decisions of such magnitude.”
The family has lodged an appeal against the decision.
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