Birmingham Women’s and Children’s NHS Foundation Trust v J & Ors

In determining a child’s best interests, the court must consider welfare in the widest sense, including medical, social and psychological factors, the burdens and prospects of treatment, and the child’s known or likely wishes, beliefs and values. The value of human life remains fundamental, but it does not require treatment that provides no overall benefit and imposes substantial burdens. Where life-sustaining treatment is not in the child’s best interests, the court cannot authorise it and withholding or withdrawing it will ordinarily be lawful, provided clinicians act reasonably and without negligence. Religious and cultural beliefs must be given careful and respectful consideration, but they do not determine the outcome independently of the child’s welfare.

The Trust applied under the inherent jurisdiction for declarations concerning J, a six-year-old child with an exceptionally rare, terminal neurodegenerative condition caused by an NRROS-gene deletion. J had profound neurological impairment, recurrent seizures, respiratory failure and repeated admissions for intensive care and mechanical ventilation.

J’s Guardian supported the application. Her parents opposed it, principally on religious and cultural grounds, maintaining that ventilation remained consistent with J’s best interests. The central issue was whether mechanical or invasive ventilatory support, including home ventilation and specified ceilings of treatment, should continue to be provided.

1. Best interests. The court applied the approach in Aintree University Hospital NHS Trust v James, [2013] UKSC 67. The inquiry required consideration of J’s welfare in the widest sense; the nature, burdens and prospects of success of ventilation; the likely outcome for J; and her wishes, feelings, beliefs and values so far as they could be ascertained.
2. The court gave substantial weight to the medical consensus and to the RCPCH framework. J’s condition was relentlessly progressive and untreatable. She was wholly dependent, unable to communicate or control her body, had minimal awareness, and suffered increasingly burdensome seizures, apnoeic episodes and respiratory distress. The court accepted that she probably retained residual capacity for pain and might retain a limited capacity for tranquillity or affection.
3. Human life retained unique and intrinsic value, and J’s Convention rights under Articles 2, 3 and 8 required careful consideration. Those principles did not compel treatment which was medically futile and burdensome. The parents’ Muslim faith and cultural values were treated with profound respect, but the court concluded that refusing home ventilation was not equivalent to refusing to help J.
4. The court distinguished Barts NHS Foundation Trust v Raqeeb & Ors, [2019] EWHC 2530 (Fam). The circumstances there, including minimal burdens, medical stability, a responsible medical opinion supporting treatment, and a viable plan for home care abroad, differed fundamentally from J’s case.
5. Mechanical ventilation was not in J’s best interests. The Trust’s application for declaratory relief was granted, and the parents were urged to engage with a palliative care plan directed to comfort and dignity.

First-instance decision. The judgment does not state any subsequent appellate history.