NR (A Child: Withdrawal of Life Sustaining Treatment), Re
[2024] EWHC 910 (Fam)
Great Ormond Street Hospital for Children NHS Foundation Trust v Neriman Braqi & Anor
15 November 2024
[2024] EWHC 2910 (Fam)
High Court
A baby with a serious illness needed a ventilator to breathe. Doctors said keeping him on it caused more pain than benefit. His mom disagreed. A judge listened to everyone and decided it was kinder to let the baby go peacefully, even though his mom didn't want that. The judge considered the baby's pain, his family's love, and the law to make the decision.
Key Facts
- •Ayden, a one-year-old, suffers from SMARD1, a severe and rare genetic disorder causing progressive muscle weakening, including respiratory muscles.
- •He is completely ventilator-dependent and requires constant intensive care.
- •He experiences frequent and life-threatening desaturation episodes.
- •He has limited ability to express pain or discomfort.
- •The medical professionals unanimously agree that continued life-sustaining treatment outweighs the benefits.
- •Ayden's mother opposes the withdrawal of treatment, believing it is in his best interests to continue.
- •The case involves balancing the burdens and benefits of continued treatment against the presumption in favor of preserving life.
Legal Principles
The paramount consideration is the best interests of the child.
Re J (A Minor)(Wardship: Medical Treatment) [1991] Fam 33, R (Burke) v The General Medical Council [2005] EWCA 1003, An NHS Trust v MB [2006] 2 FLR 319, Wyatt v Portsmouth NHS Trust [2006] 1 FLR 554, Kirklees Council v RE and others [2015] 1 FLR 1316 and Yates and Gard v Great Ormond Street Hospital for Children NHS Foundation Trust [2017] EWCA Civ 410
The court must consider the matter from the assumed point of view of the patient and what their attitude to treatment is or would be likely to be.
Re J (A Minor)(Wardship: Medical Treatment) [1991] Fam 33, et al.
There is a strong presumption in favour of taking all steps to preserve life, but this presumption is not irrebuttable and may be outweighed by the burdens of treatment.
Re J (A Minor)(Wardship: Medical Treatment) [1991] Fam 33, et al.
The court must consider the nature of the medical treatment, what it involves, its prospects of success, and the likely outcome for the patient.
Re J (A Minor)(Wardship: Medical Treatment) [1991] Fam 33, et al.
The views of the parents are important but must be considered alongside medical evidence and the child's best interests.
An NHS Trust v MB [2006] EWHC 507 (Fam)
The court must balance the burdens and benefits of treatment, considering medical, emotional, sensory, and instinctive considerations.
Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67
Human dignity is a fundamental principle to be considered in best interest decisions.
Barts Health NHS Trust v Dance & Ors (Re Archie Battersbee) [2022] EWHC 80
Outcomes
It is lawful and in Ayden's best interests to withdraw life-sustaining treatment.
The burdens of Ayden's condition and treatment outweigh the benefits, even considering the comfort and pleasure he derives from his family. There is no hope of meaningful recovery, and continued treatment only prolongs suffering.
Declarations were made regarding ceilings of care in the event of further deterioration.
Ayden's condition unexpectedly deteriorated, necessitating an urgent application and hearing.