Q (A Child) (Withdrawal of Treatment), Re

The child the subject of this application was born at the end of July 2025 in a hospital in the west of England. He is now twelve weeks old. He is the much loved son of the first and second respondents. Their privacy dictates that they are all anonymised in this judgment. His parents gave their son a special name. It is a name which recognises, and pays tribute to, the fight he has endured throughout his short life. This judgment shall refer to him as Child Q. The Applicant is the NHS Trust responsible for his medical treatment. Child Q has lived all his life in the neonatal intensive care ward of a hospital administered by the Trust.

Child Q has a profound brain injury caused by an unknown genetic condition. The consensus medical opinion is that he is unlikely to develop brain function to allow him to breathe sustainably without a mechanical ventilator or to be able to interact with the outside world. The Applicant has brought an application for a declaration that continued intubation and mechanical ventilation treatment is no longer in Child Q’s best interests. They acknowledge in their evidence that without this treatment, it is highly likely Child Q will die within minutes of extubating. The sole question before the court is whether continued mechanical ventilation is in Child Q’s best interests.

After having heard and read the evidence and received short submissions from the parties, I acceded to the Trust’s application. Given the need for the parents to return from the Royal Courts of Justice to be with their son, I announced the decision at the conclusion of the hearing without any delay. I make a declaration that mechanical ventilation and intensive care is not in Baby Q’s best interests. I endeavour to set out briefly the reasons for making this declaration.

Child Q was born at 36 weeks plus six days gestation in Hospital. His mother was awaiting an appointment with the fetal medicine team at when she went into spontaneous labour. Child Q was born with no respiratory effort and required positive pressure ventilation from birth. He was intubated at four hours of life and has been mechanically ventilated via an endotracheal tube since then, with no spontaneous breathing effort. He was transferred to the neonatal intensive care unit (NICU) at the Hospital on the same day and remains there as an in-patient.

Child Q’s immediate family consists of his mother, father and two older siblings. His family members visit him daily.

There is consensus between the Applicant’s medical professionals about the gravity of Child Q’s condition. Although the underlying diagnosis is unknown and may never be known, all treatable or reversible conditions have been ruled out. As Dr M, his treating paediatric neurologist, said in his witness statement, “It is not unusual to be unable to find a diagnosis in this situation (fetal akinesia) as the medical literature suggests that a diagnosis is only found in approximately half of children despite extensive testing”. Child Q is unable to breathe independently, move his limbs spontaneously or open his eyes. He may be able to hear. He is dependent on parenteral nutrition. The prognosis is poor. Even if ventilation is continued, Child Q is likely to survive for “months at best”. There is no possibility for him to leave an intensive care environment.

The evidence demonstrates that Baby Q “may be able to perceive pain.” He suffers very frequent epileptic seizures, which cause “frequent sudden involuntary muscle spasms and jerking movements of his face, body and limbs which appear to be painful and distressing for [hi]m”. He was shown to have had more than fifty episodes within a 45-minute electroencephalography. He is on maximal treatment, but the seizures persist. The oral evidence touched on recent developments in this issue, to which I return below.

Child Q is enduring burdensome treatment. In the words of Dr R, his treating neonatologist: “Continued intensive care carries significant burdens including seizures, frequent suctioning due to the inability to breathe or swallow, necessary medical interventions such as blood tests which appear to be causing pain, distress and therefore suffering.[Child Q] is unable to move position if he becomes uncomfortable, sadly his life is limited to his intensive care cot.” It is said by the Applicant in their evidence the burdens of continued ventilation, including the potential for pain and suffering, outweigh the benefits.

There is consensus between the medical professionals (including the treating doctors and the doctors who have provided independent second opinions) that continued treatment is not in Baby Q’s best interests. This position has been reached based upon a proper application of the Royal College of Paediatrics and Child Health (RCPCH) Guidelines as well as upon the medical investigations and the professionals’ judgement. Dr R’s evidence is that section 3.1.3 (situations in which it is appropriate to limit treatment; limited quality of life) applies. The decision not to continue with mechanical ventilation is firmly rooted within the Royal College’s ethical and medical framework for seriously unwell children.

On 16 September 2025 an independent second opinion was obtained from a paediatric neurologist. His opinion was that “Continuing life sustaining treatments (including mechanical ventilation, inotropic support, cardiopulmonary resuscitation, among others) is not at Child Q's best interest. Pursuing with these treatments would lead to additional, unnecessary suffering without any meaningful benefit. In view of this, at this time, the withdrawal of care is appropriate and aligns with Child Q's best interests. I explained to [mother] that should he be extubated, Child Q would likely die after a few minutes.” The doctor noted that three genetic test results were awaited: mitochondrial genetics, Multi Locus Imprinting Order genetics and paternal uniparental disomy 14. These results have now been received and are referenced in Dr M’s witness statement as mitochondrial rearrangement testing and whole mitochondrial genome sequencing (R299 and R300), chromosome 14q32 methylation and copy number analysis (R268), and paternal uniparental disomy (R268); they have not altered the plan. His opinion was: “I cannot think of any missed investigations and, more importantly, any that could lead to changes in management or improved prognosis.”

On 19 September 2025 a meeting with lead clinicians from the core MDT was held. The conclusion was that “the MDT concluded that the burdens of intensive care support and disease processes were leading to pain, distress and suffering such that professional opinion was that it was no longer in the best interest of Child Q to continue intensive care support and the MDT recommendation would be for reorientation to comfort focused care.”

On 25 September 2025 an MRI head scan was performed, which confirmed “progressive features with white matter signal change and ventriculomegaly, suggestive of a leukodystrophy” when compared with a previous MRI of 1 August 2025

On 29 September 2025 a best interests meeting took place. Child Q’s condition was summarised as follows:

“1.

His brain is profoundly affected. He makes no spontaneous movements. He does not open his eyes. He may be able to hear as his heart rate alters if the intensive care room becomes noisy. Otherwise he shows no evidence of awareness of his surroundings. Initially he made dystonic movements and his EEG was severely abnormal but did not demonstrate seizures. Over the past 2 months this has deteriorated and he now has intractable seizures that are not controlled, despite 3 different anticonvulsants at maximum doses. He grimaces during clinic seizures which can occur every few minutes. Further therapeutic options are limited as he cannot absorb enteral drugs. The appearance of his brain on MRI scan has also deteriorated and while it initially simply appeared immature now it looks very abnormal with abnormal white matter and loss of brain volume. This is indicative of a degenerative disorder.

2.

He is ventilator dependent. He makes no respiratory effort. His lungs are also abnormal – he has a bell shaped chest, with abnormal lung parenchyma and intermittently requires significant support. He cannot cough or swallow his secretions and requires frequent suction.

3.

He cannot swallow his own secretions or absorb milk when given via a nasogastric tube. He is dependent on parenteral nutrition as his gut does not work, likely due to poor/absent gut motility reflecting an issue with smooth muscle function.

4.

He cannot pass urine without a catheter – likely due to smooth muscle function.

5.

He has arthrogryposis, with contractures involving all 4 limbs, overlapping fingers and bilateral talipes. This is felt to be on the basis of fetal akinesia (lack of movements before birth).

6.

His pituitary gland does not work; therefore, he requires replacement cortisone and thyroxine. Additionally, he has diabetes insipidus as his posterior pituitary gland cannot regulate his fluid balance. He requires hourly monitoring of fluid balance, frequent blood tests and DDAVP subcutaneously regularly to prevent him becoming dehydrated.

7.

Although no diagnosis has yet been reached all treatable or reversible conditions have been ruled out.

On 30 September 2025 a second opinion was obtained from a visiting consultant paediatric intensivist from a different hospital albeit within the same Trust. This doctor concluded that “ongoing critical care support, including transition to Paediatric Intensive Care would not be appropriate, and on that basis, following a palliative pathway that limited Child Q’s suffering would be the most reasonable approach.”

On 7 October 2025 the Trust staff made a referral to the Trust’s Clinical Ethics Advisory Group (CEAG) for ethical guidance. CEAG is a “multidisciplinary group of healthcare professionals, academics, clergy and lay members able to offer advice about patient situations which raise ethical dilemmas, or on policies or practice guidelines” On 14 October 2025 CEAG provided their opinion, which included the following: “Medical interventions are simply sustaining the life of Baby [Q] from which he cannot be said to be deriving any benefit beyond an existence and exposure to suffering. The CEAG therefore consider the withdrawal of life sustaining therapy from Baby [Q] to be in his wider best interests and an ethically acceptable decision.”

The present proceedings were issued on 10 October 2025. On 14 October 2025, Poole J made case management directions and a Transparency Order (albeit the proceedings are in private).

I have summarised the written evidence above. It is not necessary for me to detail the written evidence. None of the parties disputed the underlying medical evidence which underpins the Applicant’s case for the relief sought.

I have carefully read the witness statements from the two treating neonatologists. I have read the two witness statements from the paediatric neurologist. I have carefully considered the two second opinion doctors’ reports which agreed with the diagnosis (or lack of) prognosis and treatment plan to move to palliation. I have also read the CEAG request and reply. All of this written evidence supports the bleak prognosis. The evidence supports the burdens of treatment and the likelihood that the multiple seizures are painful and are causing discomfort to Child Q. To add to his burdens and pain is the impact of the frequent suctioning given he cannot swallow himself. This is carried out regularly and likely causes discomfort. He has been having so many blood tests, he has required blood transfusions. He has a line which is at high risk of infection.

I heard oral evidence from one treating neurologist and one treating neonatologist. They told me that sodium valproate was administered, as the fourth anti-seizure drug on 21 October 2025. This has helped to reduce the frequency and the severity of the Child Q’s seizures, however, they still occurred and they likely remained painful. Their evidence was that the improvement this week was a ‘honeymoon’ effect and would not last. They had seen this with earlier prescribed medications. I was also told that the treatment remained very risky because the venous line might soon fail and there could be a delay in re-inserting a line or there might be a need for sub-cutaneous administration of anti-seizure administration. This all placed Child Q at risk of pain which was difficult to control. The slight (and likely temporary) change in seizure pain management did not alter the best interests analysis of any of the clinicians. When asked for more time to permit the parents to spend more time with Baby Q before extubation, the witness evidence was that such a period could only be a very short one as any longer delay would be unethical given the extent of Child Q’s suffering.

The mother filed a moving witness statement. Neither she nor her husband (understandably) wished to give oral evidence. Her written evidence told me the parents are devout ‘Protestant Christians.’ She is the mother to two older siblings. She has a very close knit family. She spends around five to six hours each day with her son. She notes he is fed milk through a nasal tube and has a central line in his neck. Her evidence is that Child Q requires frequent suctioning because he cannot swallow. He does not respond much to the world around him. He might react to bright lights or loud noises. She explains that he has a lot of seizures and the ventilator cannot get enough air into his lungs because of his stiff muscles and she thinks this may cause him pain. She noted the seizures had been better since 21 October 2025. She states she cannot fault the care the nurses and doctors have given Child Q and she has an excellent relationship with them.

She states that whilst she and her husband agree with the doctors about Child Q’s condition and what this means for his future (the prognosis) her faith does not permit her to agree with the plan to cease mechanical ventilation. “It would be like we are agreeing to kill him.” She states: “We believe that if God wants to take [Child Q’s] life, God will take it, without me interfering.” She hopes for a miracle and believes in miracles. She notes a miracle took place when she was hospitalised in intensive care some years ago.

The Guardian was not directed to file a welfare analysis, however she filed her helpful notes and her position was clearly set out in Mr Osborne’s position statement. She met with Child Q, the parents and clinicians on 20 October 2025. She notes Child Q has a small wooden cross in his bed. He was covered in a handknitted white and green patchwork blanket. Her summary of her investigations is all consistent with the evidence filed by the Applicant and the mother.

A summary of the law in this area was set out in Re J (A Child) (Withdrawal of Ventilation) [2025] EWHC 2247 (Fam) at paragraphs 37 to 42. I set that out again for the sake of completeness. The law in the area of serious medical treatment for children is clear and settled. Where a parent is not willing to exercise parental responsibility to sanction the medical treatment (or its withdrawal), the court has the ultimate power to require treatment to be given, in accordance with a ‘best interests’ test. In considering such an application the Court must weigh up the advantages and disadvantages of providing or withholding the various treatment options within that plan, and to balance them in order to determine where the child’s best interests lie (Re J (a minor) (wardship: medical treatment) [1991] 2 WLR 140; 3 All ER 930; [1990] 2 Med LR 67.

The court’s approach to the child’s best interests will necessarily be highly fact-specific and the courts have been slow to set definitive guidance on how to approach the ‘best interests’ test in this context. For example, in NHS Trust v MB [2006] EWHC 507Holman J said at paragraphs 106-107:

“…this is a very fact specific decision taken in the actual circumstances as they are for this child and today… My sole and intense focus has been this child alone”.

MacDonald J has provided a helpful summary of the legal principles in Manchester University NHS Foundation Trust v Fixsler & Ors [2021] EWHC 1426 (Fam):

“56 The court may grant a declaration declaring that treatment in accordance with the recommendation of the child’s doctors can take place, on the grounds that it is in the child’s best interests (see In re B (A Minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421). The jurisdiction of the court to make such an order arises where a child lacks the capacity to make the decision for him or herself, in the context of a disagreement between those with parental responsibility for the child and those treating the child (An NHS Trust v MB (A Child Represented by CAFCASS as Guardian Ad Litem) [2006] EWHC 507 (Fam); [2006] 2 FLR 319). The court has no power to require doctors to carry out a medical procedure against their own professional judgment.

57.

As I have observed in previous cases, the legal framework that the court must apply in cases concerning the provision of medical treatment to children who are not “Gillick” competent is well settled. The following key principles can be drawn from the authorities, in particular In re J (A Minor) (Wardship: Medical Treatment) [1991] Fam 33 , R (Burke) v General Medical Council (Official Solicitor intervening) [2005] EWCA 1003; [2006] QB 273 , An NHS Trust v MB, Portsmouth Hospitals NHS Trust v Wyatt [2005] EWCA Civ 1181; [2005] 1 WLR 3995 , Kirklees Council v RE [2014] EWHC 3182 (Fam); [2015] 1 FLR 1316 and In re Gard (A Child) (Child on Life Support: Withdrawal of Treatment) [2017] EWCA Civ 410; [2018] 4 WLR 5 :

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 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.

iii.

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. Within this context the wise words of Hedley J in Portsmouth NHS Trust v Wyatt (Southampton NHS Trust intervening) [2004] EWHC 2247 (Fam); [2005] 1 FLR 21 at [21] should be recalled:

“This case evokes some of the fundamental principles that undergird our humanity. They are not to be found in Acts of Parliament or decisions of the courts but in the deep recesses of the common psyche of humanity whether they be attributed to humanity being created in the image of God or whether it be simply a self-defining ethic of a generally acknowledged humanism.”

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.

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. 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.

vi.

Within this context, 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.

vii.

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.

viii.

Each case is fact specific and will turn entirely on the facts of the particular case.

ix.

The views and opinions of both the doctors and the parents should 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. In this context, in An NHS Trust v MB Holman J, in a passage endorsed by the Court of Appeal in In re A (A Child) [2016] EWCA Civ 759; [2016] Med LR 427 at [34] , said as follows:

“The views and opinions of both the doctors and the parents must be carefully considered. Where, as in this case, the parents spend a great deal of time with their child, their views may have particular value because they know the patient and how he reacts so well; although the court needs to be mindful that the views of any parents may, very understandably, be coloured by their own emotion or sentiment. It is important to stress that the reference is to the views and opinions of the parents. Their own wishes, however understandable in human terms, are wholly irrelevant to consideration of the objective best interests of the child save to the extent in any given case that they may illuminate the quality and value to the child of the child/parent relationship.”

x.

The views of the child must be considered and be given appropriate weight in light of the child's age and understanding.”

These principles have been reiterated at appellate level. In In re A (A Child) [2016] EWCA Civ 759; [2016] Med LR 427 the Court of Appeal confirmed once again that, whilst requiring great sensitivity and care of the highest order, the task of the court in cases concerning disputes in respect of the medical treatment of children can be summed up by reference to two paragraphs from the speech of Baroness Hale in Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591 at para 22 , namely:

“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.”

And at para 39:

“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.”

In the case of Gard, McFarlane LJ (as he then was) reiterated at para 112 that:

“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.”

Whilst Article 2 of the ECHR is plainly engaged where life and death medical decisions are in question, there is no obligation to provide treatment that is assessed as being futile. In An NHS Trust A v Mrs M and An NHS Trust B v Mrs H [2001] 1 All ER 801, it was held by Dame Elizabeth Butler-Sloss, then President of the Family Division, that:

“Article 2… imposes a positive obligation to give life-sustaining treatment in circumstances where, according to responsible medical opinion, such treatment is in the best interests of the patient but does not impose an absolute obligation to treat if such treatment would be futile.”

Given the religious beliefs of Child Q’s parents, it is also necessary to reference paragraphs 81 – 82 of Fixsler v Manchester University NHS Foundation Trust and another [2021] EWCA Civ 1018 where Baker LJ (with the agreement of Carr LJ (as she then was) and Elisabeth Laing LJ) held:

“The family’s religion and culture are fundamental aspects of this child’s background. The fact that she has been born into a devout religious family in which children are brought up to follow the tenets of their faith is plainly a highly relevant characteristic of hers. Under s.1(3)(d), the court is required to have regard to the fact that Alta is from a devout Hasidic family which has very clear beliefs and practices by which they lead their lives and that, if she had sufficient understanding, she too would very probably choose to follow the tenets of the family religion. I agree with Mr Simblet that this is a central part of her identity – of “who she is”. It is unquestionably an important factor to be taken into consideration. But it does not carry pre-eminent weight. It must be balanced against all the other relevant factors.

None of the factors in the checklist has any presumption of precedence. The weight to be attached to each factor depends on the circumstances of the case and the final decision is that of the court. Whilst in an individual case the child’s wishes and feelings, and her background and characteristics, including the religious and cultural values of the family of which she is a member, may attract particular weight, in all cases they start with an equal value to that of all the other relevant factors.”

And lastly I note that at paragraph 85 of Fixsler it was said: “When considering the child’s assumed point of view, it is difficult if not impossible to attribute any views, including religious beliefs, to a very young child who has never had, nor will have, any cognitive understanding.”

The Applicant submitted in Ms Power’s helpful position statement:

“The applicant recognises that there is a strong presumption in favour of the preservation of life. Baby Q’s life has value and dignity. He is loved by his family who visit him every day. He cannot see but may be able to hear. It is entirely understandable that his parents, who have expressed strong religious faith and who have described personal experience of surviving serious complications in a neonatal intensive care unit, are hoping for a miracle. Tragically, it is submitted that these factors are outweighed by the burdens of continued treatment: in particular, by the frequent epileptic seizures which appear to be painful and distressing for Baby Q and the burdens of intensive care treatment, in conjunction with the very poor prognosis. Adopting the words of MacDonald J at first instance in Fixsler, this is a case “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.” Following the lodestar of Baby Q’s best interests, it is submitted that this is a situation where continued treatment is merely prolonging Baby Q’s suffering, rather than conferring any meaningful benefit upon him, or, in the alternative, that the theoretical benefit of continued existence is outweighed by the burdens and suffering caused by the continuation of treatment.”

At the conclusion of the oral evidence, and after some time to reflect, Mr Hallin thoughtfully articulated the mother’s position with simplicity. Her position is also the position of the father. Mr Hallin submitted:

The Guardian, after careful thought and analysis, supported the Applicant’s case for declarations.

There is nothing unusual or irrational in the parents’ position. The belief that God will intervene and that miracles can happen provides comfort to billions of Christians. Without hesitation (on the facts of this case) I accept this is the genuine and loving position of Child Q’s parents. They (rightly) accept the medical evidence and did not dispute the burdensome nature of the treatment. They did not dispute the treatment is futile (the hope of a miracle aside). They did not dispute the clinical evidence on prognosis.

As the caselaw set out above sets out, parental religious views have no pre-eminent weight in the best interests analysis. It is a factor to be considered alongside many others. I attach weight to the mother and father’s genuinely expressed and held religious beliefs, as part of their Evangelical Protestant Christian faith. They are important factors.

I accept the clinical evidence that an exact diagnosis is not possible but nor is that unusual. The reality is – as clearly expressed in the summary provided to the best interest meeting – that Child Q’s medical condition is very poor. It is bleak. I accept the medical evidence is that it is highly likely he will not improve in any way and I further accept that it is likely he will die within around three months, even if he remained on mechanical ventilation.

I accept the mechanical ventilation is futile. It maintains life (for now) but it is not reversing the significant limitations on Child Q’s functioning. I accept there has been extensive testing by a range of clinicians and that they are right to be satisfied that there are no further tests or procedures that can be undertaken to find a form of diagnosis that would reverse the condition that has inflicted suffering on Child Q.

I have no hesitation in accepting mechanical ventilation prolongs the burdens and the suffering, Child Q has endured in his short life. He has little awareness but I am satisfied he can more likely than not feel pain. The experienced NICU nurses told the Guardian the seizures cause facial expressions and jerking which they considered cause discomfort and pain. I interpret the mother’s evidence as accepting this. There is also written evidence that seizures have caused Child Q to cry, causing tears to roll from his closed eyes. The oral evidence was that this could be an expression of pain or it could be muscle contractions causing tears. Taking all the evidence together, I am in little doubt seizures cause Child Q discomfort and pain. I also accept the oral evidence that the fourth anti-seizure medication, which has been prescribed from Tuesday 21 October 2025 has created a ‘honeymoon’ effect which is temporary. More likely than not the seizure level will return. In any event the seizures have never been prevented. I am also acutely concerned with the fragility of the administration of the anti-seizure medication and the possibility that Child Q may well lose the ability to have anti-seizure medication administered through his current line and it may take time for another to be inserted (which may or may not be possible) and this would lead to gaps in treatment and, more likely than not, extended pain and discomfort.

Aside from the seizures, it is also the case that it is more likely than not the frequent suctioning is uncomfortable or painful. Child Q also receives very many other unpleasant interventions. For example, he has so many blood tests, given his small size, he requires blood transfusions. I am in no doubt mechanical ventilation is prolonging pain, discomfort and suffering.

Amidst this bleak picture, Child Q is surrounded by the love of his family. He is the beloved little brother of two siblings who regularly spend time with him. His father’s love (and distress) was visible to those in court at the hearing. He cherishes his son. As of course does his mother who is able to be with him for many hours each day. As only a mother can, she holds him and soothes him. She feels he can be calmed by her presence and touch and whilst his awareness is very limited, he has some.

His parents’ faith commands them to believe that, in the midst of their son’s suffering, the light of life continues to glow with great force. I remind myself that "[t]he principle of the right to life can be simply stated but of the most profound importance. It needs no further elucidation. It carries very great weight in any balancing exercise” (Baker J (as he then was) in W v M [2011] EWHC 2443 (Fam) at paragraph 220). Child Q’s parents’ Christian faith underpins our understanding of the value of all life and the law’s obligation to seek to protect it. “In him was life, and the life was light of all mankind. The light shines in the darkness and the darkness has not overcome it.” Very great weight is therefore accorded, in the balancing exercise, to the value of life. Child Q, with his wooden cross, under his hand knitted blanket, is surrounded by the love of his family. He is supported by the highest levels of professional care of devoted nurses and clinicians who try to shield him from pain and discomfort. Therein lies much that is bright with both dignity and value.

Child Q’s life in NICU is also one of suffering and burden. The evidence is that he will not get better. Mechanical ventilation is futile. All tests have been undertaken to seek to reverse the life limiting conditions he suffers from. Given his very low level of awareness, the ability to comfort him is very much reduced. Approaching the best interests evaluation, as the law requires, with a focus on the futile nature of the treatment and the fact the mechanical valuation continues the burdens of suffering, I conclude that the withdrawal of mechanical ventilation is more consistent that continuing life, in the circumstances described above. This outcome is consistent with established medical practice, as is clear from the Royal College’s Guidelines, referenced above.

Appropriate regard has been given to Child Q’s parents’ Christian faith. They have not been required to exercise their parental responsibility to agree to the withdrawal of ventilation. Their ability to pray for a miracle and find comfort in their faith remains intact.

Plans were discussed in court for the family’s involvement in the arrangements for cessation of mechanical ventilation.