An NHS Trust v NM & Ors [2026] EWHC 253 (Fam)

“In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult. The judge must decide what is in the child's best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient (Re J). There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable (Re J). The term ‘best interests' encompasses medical, emotional, and all other welfare issues (Re A). The court must conduct a balancing exercise in which all the relevant factors are weighed (Re J) and a helpful way of undertaking this exercise is to draw up a balance sheet (Re A)”

“Whilst its application requires sensitivity and care of the highest order, the law relating to applications to withdraw life sustaining treatment is now clear and well established. It can be summed up with economy by reference to two paragraphs from the speech of Baroness Hale in what is generally regarded as the leading case on the topic, notwithstanding that it related to an adult, against the backdrop of the Mental Capacity Act 2005. In Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591 Baroness Hale said at paragraph 22:- “Hence the focus is on whether it is in the patient's best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.”

“The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be”

“As regards the application by the court of [the] best interests principle in the context of medical treatment to children who are not ‘Gillick’ competent, this is well settled. The following key principles can be drawn from the authorities, in particular 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, Re Ashya King [2014] 2 FLR 855, 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: i) The paramount consideration is the best interests of the child. The role of the court when exercising its jurisdiction is to take over the parents’ duty to give or withhold consent in the best interests of the child. It is the role and duty of the court to do so and to exercise its own independent and objective judgment. ii) The question for the court is whether, in the best interests of the child patient, a particular decision as to medical treatment should be taken. The term ‘best interests’ is used in its widest sense, to include every kind of consideration capable of bearing on the decision, this will include, but is not limited to, medical, emotional, sensory and instinctive considerations. The test is not a mathematical one, the court must do the best it can to balance all of the conflicting considerations in a particular case with a view to determining where the final balance lies. iii) Each case is fact specific and will turn entirely on the facts of the particular case. (iv) In reaching its decision the court is not bound to follow the clinical assessment of the doctors but must form its own view as to the child's best interests. v) The starting point is to consider the matter from the assumed point of view of the patient. The court must ask itself what the patient's attitude to treatment is or would be likely to be. Within this context, the views of the child must be considered and be given appropriate weight in light of the child's age and understanding. vi) There is a strong presumption in favour of taking all steps to preserve life because the individual human instinct to survive is strong and must be presumed to be strong in the patient (see Airedale NHS Trust v Bland [1993] ACR 789 at 825). The presumption however is not irrebuttable. It may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering and other burdens are sufficiently great. vii) The views and opinions of both the doctors and the parents must be considered. The views of the parents may have particular value in circumstances where they know well their own child. However, the court must also be mindful that the views of the parents may, understandably, be coloured by emotion or sentiment. There is no requirement for the court to evaluate the reasonableness of the parents’ case before it embarks upon deciding what is in the child's best interests. viii) The court must consider the nature of the medical treatment in question, what it involves and its prospects of success, including the likely outcome for the patient of that treatment. ix) Regard must be paid to the rights of the child, in particular her right to life under Art 2 and her right to respect for private and family life under Art 8. Regard must also be paid to the parents’ rights, in particular their right to respect for private and family life under Art 8. In this case, the right of Tafida and her parents to freedom of thought, conscience and religion under Art 9 of the ECHR is also engaged and must be considered. x) There will be cases where it is not in the best interests of the child to subject him or her to treatment that will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child's and mankind's desire to survive”

“As the authorities to which I have already made reference underline again and again, the sole principle is that the best interests of the child must prevail and that must apply even to cases where parents, for the best of motives, hold on to some alternative view”

“I When life is limited in quantity If treatment is unable or unlikely to prolong life significantly it may not be in the child's best interests to provide it. These comprise: A. Brain stem death, as determined by agreed professional criteria appropriately applied; B. Imminent death, where physiological deterioration is occurring irrespective of treatment; C.Inevitable death, where death is not immediately imminent but will follow and where prolongation of life by LST confers no overall benefit. II When life is limited in quality This includes situations where treatment may be able to prolong life significantly but will not alleviate the burdens associated with illness or treatment itself. These comprise: A. Burdens of treatments, where the treatments themselves produce sufficient pain and suffering so as to outweigh any potential or actual benefits; B. Burdens of the child's underlying condition. Here the severity and impact of the child's underlying condition is in itself sufficient to produce such pain and distress as to overcome any potential or actual benefits in sustaining life; C. Lack of ability to benefit; the severity of the child's condition is such that it is difficult or impossible for them to derive benefit from continued life”

“On the 8th of November NM had a brief period of cardiac compressions due to her breathing tube blocking off with secretions. NM’s oxygen requirement had increased to 60% and she was requiring higher pressures on the ventilator. There was a large leak between the breathing tube and her windpipe of up to 100%. Due to the concerns about leakage around the size 3mm endotracheal tube, a third intubation was required and happened on 11th November 2025, to upsize to a size 3.5mm endotracheal tube. A team of 6 Neonatal Consultants was assembled with a variety of difficult airway equipment in preparation to upsize the breathing tube. As she already had a breathing tube in place a bougie was used. A bougie is a firm plastic rod that is inserted into the current breathing tube and remains in place in the windpipe whilst the old breathing tube is removed and a new one is inserted over the bougie into the windpipe. The bougie is then removed. This technique is used when it is known the intubation will be difficult and normal airway equipment cannot be used. Whilst NM was effectively intubated on the first attempt, the procedure was still technically difficult and took longer than an uncomplicated intubation. NM’s saturations (oxygen levels in her blood) became very low at 25% and her heart rate, having been 100-120 beats per minute before the procedure (which was normal for NM), increased to 170 beats per minute with the stress of the procedure and then dropped acutely to 100 beats per minute before recovering without the need for cardiac massage. This demonstrated that the change in breathing tube was stressful for NM and she did not tolerate it well.”

“3.1 It is important to note that initial intubation procedures and the subsequent upsizing of the endotracheal tube were performed prior to the diagnosis of a catastrophic haemorrhagic spinal cord insult, confirmed by MRI on 18th November 2025. Before a definitive diagnosis was established, the prognosis remained uncertain. The objective was to complete the comprehensive diagnostic pathway under Dr B’s (our Consultant Perinatal Neurologist) guidance, with no limitations placed on the extent of medical management. The MRI on 18th November 2025 established a diagnosis for NM, showed an antenatal, rare, catastrophic haemorrhagic spinal cord insult resulting in quadriplegia and ineffectual diaphragmatic function. There was also white matter injury to the substance of the brain itself. The parents were fully informed about the irreversible injury and very poor prognosis using a face to face interpreter and Tamil speaking clinician. 3.2 On 19th November 2025 the attending consultant (Dr G) had a meeting with NM’s family to discuss the findings of the scans again, and regarding the management of NM’s future care. The Trust also obtained advice from a different Trust, and approached the neurosurgical team at Great Ormond Street Hospital. They confirmed that no surgical intervention was possible to improve NM’s outcome. The long-term ventilation team at Great Ormond Street Hospital were also contacted and gave the opinion that it would not be appropriate to offer NM long term ventilation. The neonatal team felt at this point that continuing to provide intensive care was not in NM’s best interest and would only prolong her suffering. NM’s parents did not agree with this opinion. Between 19th November and 26th November 2025 there were several discussions between attending consultants (Dr B and Dr S Consultant Neonatologists) and parents (all with Tamil interpreters) reiterating the MRI result, diagnosis and prognosis. The parents continued to disagree with the findings, however the unanimous position of the Neonatal Consultant team and multidisciplinary neonatal team was that considering the established diagnosis, continuing intensive care due to this untreatable extensive neurological damage would be futile and intensive care should stop. The non escalation plan / ceiling of medical management was therefore established, documented in NM’s notes, and communicated to the parents on both 19th and 26th November 2025 by attending consultants. 3.3 On the 1st December 2025 NM’s case was presented and discussed at the Trust Clinical Ethics Committee with parental consent, and whilst this Committee does not make clinical decisions, the Committee was in unanimous agreement for the non-escalation plan to remain in place (not for reintubation or any resuscitation measures offered). The purpose for this Committee meeting was to consider the recommendation of the Neonatal Consultant team and multidisciplinary neonatal team that it was not in NM’s best interests for life sustaining treatment to consider to be given and defined a ceiling for medical management including the decision not for re-intubate. The Committee agreed with this opinion, the ceiling of medical management to be in place for NM whilst the neonatal team initiated the legal pathway for a court judgement regarding the planned withdrawal of intensive care therapy in NM’s best interests. I documented the summary and outcome of this meeting on the 2nd December 2025. 3.4 Since 1st of December 2025 NM has remained cardiovascularly stable in the neonatal intensive care unit receiving continuous invasive mechanical ventilation despite the increasing leak around the suboptimally sized breathing tube and infection episodes treated with antibiotics. Additionally, to mechanical ventilation she needs regular suctioning, nasogastric tube feeding and urinary catheter to be in place. However, this situation could change rapidly at any time as with any ventilated patient with a breathing tube that has been in for a long duration, causing her to deteriorate unexpectedly. 3.5 On 18th December 2025, the Trust obtained a second opinion from Dr U (Consultant in Neonatal Medicine), Chelsea and Westminster Hospital, and who concluded that from her review of NM’s medical history and assessment, that her condition was not compatible with independent survival, that there was no realistic hope for improvement or therapeutic intervention, and that ongoing provision of ventilatory support would merely delay her death and cause her discomfort.”

“As per my previous statement, NM currently has an audible, >90% leak around the size 3.5mm breathing tube during ventilation, and our neonatal team anticipate that due to the suboptimal size of the breathing tube combined with her growth, this will eventually make ventilation ineffective. The events of this afternoon underscore how fragile NM’s condition is and highlight the considerable risk of a sudden and severe deterioration due to her extremely limited ability to tolerate low oxygen levels. In my opinion, this is largely caused by the secretions due to the breathing tube and mechanical ventilation, as opposed to the size of the tube. This has occurred during her previous intubation attempts (please see my Statement of 14th January 2026, Sections 4.1- 6.3, for a detailed description of these attempts). Should a more prolonged episode of low oxygen occur, this could quickly lead to a significant drop in her heart rate which could be irreversible, ultimately resulting in her death in a manner that may lack dignity, and potentially without her beloved parents by her side. It is difficult to be certain what impact desaturation has on NM, but the feeling of hypoxia can be distressing. Deep hypoxia for a prolonged period will result impaired/ loss of consciousness and repeat prolonged period of hypoxia can lead to additional brain injury.”

“NM is at a crossroads. There are only two paths she can take: full intervention, or palliation. Maintenance of the status quo is not a reasonable option, as it condemns her to staying in hospital with suboptimal technical care. Parents and her sister were very eloquent about how much she means to the family. I understand this and it was an emotional meeting. There is no question that her family loves her deeply. Parents seem to believe that she will get better at an undefined point in the future. There is no described mechanism for this to occur, and goes against the combined expertise of specialists in at least five hospitals around the UK. Mother expressed to me she “knows” that NM will get better. I suggested to her she “wants” her to get better. It is important to differentiate between these. We all want her to get better. However, all the evidence is that NM has suffered a truly catastrophic prenatal injury, which is permanent, and has affected her movements and her cognition. I do not believe that NM will gain enough cognitive function to enable her to benefit sufficiently to overturn the very significant burdens to her care, involving operations, constant painful interventions, deprivation of sensation, deprivation of movement, and loss of dignity. With a heavy heart, I would therefore advise a palliative care plan for her. I do not think that the burdens of continued treatment are outweighed by the benefits. Therefore continued treatment becomes unethical. In this I agree with the previous specialist opinions by the local neonatal team, the PICU team via Dr M, the external neonatal second opinion by Dr U, the hospital Ethics committee, and the Great Ormond St Hospital Long Term Ventilation team. I have read the proposed care plan …. I agree with this plan which has been written with great sensitivity. Her comfort should be prioritised above all. Specifically, I do not think that giving non invasive ventilatory support (CPAP or bilevel (DuoPAP)) is reasonable. This would risk prolonging matters without benefit. At the current time, despite her large endotracheal tube leak, she is transferrable to another site (hospice or home) for extubation. The options of extubation in a hospice or home are completely dependent on both NM’s stability at the time, and the logistical difficulties which may be encountered. For instance, it would not be reasonable to have to change her endotracheal tube for the purposes of transporting her, with the risks that this entails”

“never come across any child during my career with NM’s constellation of physical and cognitive problems who has been given 24/7 long term ventilation”