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Mrs Justice Theis DBE:
Introduction
- OB was born in October 2024 with no complications and his arrival naturally brought great joy to his parents, MB and FC. When less than a month old OB suffered an unexplained cardiac arrest at home in the early hours of the morning on 18 November 2024 and was admitted to hospital. He was transferred to another hospital where he remains on a Paediatric Intensive Care Unit (PICU). The consequences of that for OB and his parents have been devastating. Medical investigation has revealed extensive and widespread damage to his brain, resulting in severe cerebral volume loss and damage. OB's mother has kept a daily vigil at his bedside since his admission to hospital. Both parents have remained steadfast in their devotion to OB. Their situation is every parents' worst nightmare.
- Due to the extent of his brain injury and the medical view that he is unlikely to recover Guys & St Thomas' NHS Foundation Trust (the Trust) have applied to the court for orders that it is lawful and in OB's best interests for him not to receive invasive or non-invasive ventilation or continuation or escalation of intensive care support, to receive compassionate extubation of ventilation and be provided with palliative care only.
- That application is opposed by OB's parents. Put simply, they ask for more time. They remain positive and hopeful that OB will improve.
- OB's Children's Guardian, Ms Demery, has reported to the court and supports application by the Trust.
- At this hearing the court heard oral evidence from Dr A, Paediatric Intensive Care Consultant, Dr B, Paediatric Palliative Care Consultant and from both of OB's parents. I recognise that the evidence was at times distressing for OB's parents to listen to but it was obvious they listened to it with very great care.
Background
- OB was born at 41 weeks gestation. The antenatal and post-natal course is reported as being uneventful. OB went home with mixed breast and bottle feeding and was reportedly well until the event that resulted in his admission to hospital on 18 November 2024.
- According to the history given to the hospital OB was put to bed after a feed which he took well. His mother reported that she woke about 2 am to feed him again and was concerned by his appearance and breathing. The emergency services were called and arrived about 20 minutes later. OB was found to be asystolic, meaning his heart's electrical activity had stopped and his heart had stopped pumping.
- CPR was commenced and adrenaline given, a minute later OB had palpable output. OB was successfully intubated six minutes later. No response or reaction was noticed from OB, even though this is considered a highly stimulating procedure where a baby would be expected to cough or gag.
- OB was transferred to hospital, stabilised further but the relevant tests and observations indicated OB's heart had been arrested for a significant period of time, at least thirty minutes.
- Following a CT scan OB was transferred to the specialist hospital where he is at now, via the specialist retrieval service. Whilst being taken for the scan OB had an accidental extubation, which was remedied without destabilisation. The CT scan did not show any abnormalities in that there was no bleeding or fracture. It was too early for any swelling to show.
- On arrival at the hospital PICU neuroprotective measures were instituted including targeted temperature control, sedation and muscle relaxation, optimisation of oxygenation, ventilation and electrolytes. The purpose of this was to give the brain the maximum chance of recovery over the initial period.
- Investigations over the next 24 hours did not reveal an obvious cause of the cardiac arrest.
- By late afternoon the day following admission OB was noted to have fixed dilated pupils. An MRI scan and EEG were performed. The EEG revealed a severely encephalopathic state with no epileptiform activity, in Dr A's words O was 'in a very deep coma'. The MRI revealed features in keeping with a widespread process affecting the brain and the brain stem resulting in changes compatible with widespread hypoxic ischaemic insult or significant acute metabolic decompensation. No signs of traumatic head injury were noted and specifically no intracranial bleeding and no cervical injury. As Dr A said in oral evidence the MRI told us 'whole brain all parts very severely damaged. We have to wait until neuro protection time finished and see if the baby wakes up and what the baby can do. But extent of injury is very concerning because it includes brain stem. I would be saying to parents high level of concern because of this.'
- Two days after admission all sedation was stopped in preparation for brain stem testing. This was undertaken twice and on the second occasion, when the measure of carbon dioxide rose, OB took two gasps about 30 seconds apart. As a result death by neurologic criteria was not confirmed due to this. However, it was noted during both sets of tests there was no other neurologic response.
- Following this brain stem testing the relevant clinicians discussed the position with the parents, setting out the extent and severity of OB's brain damage and that there was no hope of any meaningful recovery with life separated from a ventilator. At this meeting they discussed with the parents OB being extubated. Neither parent agreed to this course, as they believed he would get better with more time. The parents were informed that the hospital would seek external second opinions from consultants in intensive care and neurology.
- Fully body CT scans were undertaken. That scan revealed extensive maturation of the brain with cystic degeneration of the cerebral and brain stem structures, with severe cerebral volume loss and compensatory ventricular dilation. There was no evidence of trauma.
- On 4 December 2024 OB was reviewed and examined by a second Paediatric Neurologist, Dr L, who noted OB to have intermittent breathing but found him completely unresponsive to any stimulation.
- On 4 December 2024 an attempt was made to extubate OB as he was occasionally triggering the ventilator. His respiratory effort was inadequate, he was unable to protect his airway and his breathing was inadequate. He was reintubated after about ten minutes. Although muscle relaxant was used no anaesthetic agents were used as OB was so deeply unresponsive. Dr A said in oral evidence there were no further attempts to extubate as there had been no clinical change, the airways are a delicate structure that they did not want to risk causing trauma to.
- It was noted OB had developed clonus and on 5 December 2024 a repeat EEG was undertaken to exclude seizures. The EEG showed burst suppression with no response to stimulation and no seizures. In oral evidence Dr A described this as being the stage before being completely flat, the burst of activity means OB is still breathing so his brain is not completely dead but OB has no cerebral function.
- On 5 December 2024 the external second opinion Paediatric Intensivist, Dr C, saw OB with his mother present. Dr C reached the same conclusions as the treating team and discussed that with OB's parents.
- On 7 December 2024 Dr D, the second opinion Paediatric Radiologist, visited OB and also reached the same conclusion as the treating clinicians. Dr D noted that OB had started to develop stiffness in his hands and upper arms.
- Following the external second opinions the treating clinicians had further meetings with the parents on 6 December 2024. Although the parents still believed OB would get better they accepted the medical team would not perform CPR in the event OB had a spontaneous cardiac arrest.
- A further meeting was held with the parents on 13 December 2024 when the conclusions of the second opinion doctors was discussed and it was explained that, because of the severity of OB's brain damage, assessed through a combination of the clinical examination, brain scans and EEG the medical consensus was that it was in OB's best interests that he be taken off the ventilator. OB's parents did not accept this view and wanted more time.
- This application was made on 17 December 2024. Directions were initially made on 23 January 2025 listing this hearing. On 3 February 2025 permission was given to the parents to instruct an expert Consultant in Paediatric Intensive Care, Dr Macintosh.
- Dr Macintosh visited OB on 7 February 2025 and met the parents. On examination he could not elicit any cough, gag or pupillary responses. OB had no spontaneous movement in his limbs, his upper and lower limbs were noted to be stiff and contracted and he was unable to straighten any joints. OB's fingers were noted to be curled and could not be straightened. OB's abdominal muscles were extremely stiff and contracted. He notes in his report 'Head scans are very abnormal from the outset and the repeat CT scan show further deterioration of the brain injury. EEGs are very abnormal from the outset and then progress to burst suppression despite being off all sedation. This is a sign of severe brain injury'.
- Dr Macintosh summarised his clinical observations as follows 'In summary what I found was a child who is unresponsive to visual, auditory or painful stimuli, who lacked basic brain stems functions except breathing (no pupillary response, no response to pain, no cough or gag reflect) and manifested extreme abnormalities of tone, posture, power and motor reflexes consistent with a severe brain injury.' He agreed there was no obvious cause for the cardiac arrest.
Medical Evidence
- In her statement in mid-January 2025 Dr A described OB's presentation as follows:
"5. [O'Bs] clinical examination is now much worse than before:
i. His eyelids are shortening as the muscles remain contracted and this has resulted in his eyes being partially open all the time with no blinking, meaning that the only way to protect his corneas is with eye drops regularly by the nursing team
ii. His entire core and trunk is severely spastic with continuous unrelenting muscle spasm.
iii. His breathing is relatively regular although the pattern is abnormal with varying tachypnoea and bradypnoea
iv. If you try to flex his neck, his whole body moves as one, and each breath the ventilator or he takes causes head movement because of the truncal spasticity
v. His abdominal muscles remain tightly contracted all the time
vi. When he is fed, the nurses notice he passes very loose stool in the next hour or so and despite being fed a good amount of calories he appears to be getting thinner. I have concerns his feed is not being properly absorbed.
vii. He had very thick and offensive secretions from the ETT in the week of 14 January. We started oral antibiotics after sending a sample. Two bacteria were growing in the sample, but he had been on the correct antibiotics already and had not been feverish. The secretions were improving."
- In her third statement dated 31 January 2025 Dr A provided the following update:
"17. [OB] has shown no sign of any neurologic recovery in over more than 2 months in intensive care.
18. He has no discernible brain stem function bedsides breathing.
19. He is fully dependant on the endotracheal tube, the ventilator and 24-hour intensive nursing care to maintain airway safety, effective breathing and survival.
20. His body is now demonstrating the signs of previous severe neurologic injury with fixed flexion contractures of eyelids, abdominal muscles, hands, and upper and lower limbs."
- In her oral evidence Dr A recognised they had not been able to find a cause for OB's cardiac arrest and understood the parents distress when she had meetings with them to discuss the options for OB. She also understood why the results of the first CT scan may have given the parents' hope and, in her words, been falsely reassuring. The report of that scan says there were no abnormalities, which she said is not unusual unless there had been a bleed or a fracture, as by the time that first scan had been done there had not been time for the swelling. Dr A described the scan as a 'blunt tool', it was essentially looking for blood or fractures. The more detailed picture comes from an MRI.
- As regards the accidental extubation on the way to the first scan Dr A said the records record it being appropriately dealt with and OB's oxygen levels did not drop.
31. When asked about the parents questions that if OB's heart is still beating and he has some breathing there is some hope for recovery she said 'heart rate and breathing automatic because so utterly vital, however it is the brain that modulates those functions….the patterns on [OB's] breathing and heart is not normal as neither are responsive to interventions'. Even though O gasped in the second brain stem test she regarded it as 'very delayed and abnormal'.
- Dr A was asked about the parents feeling under pressure to make a decision which she recognised from their perspective, but she considered clinically for a child to be in PICU for a long time can increase the difficulties for the child and the medical opinion was that OB was not going to get better and any further treatment would be futile. Dr A recognised there is no evidence that OB is experiencing pain based on the lack of any clinical signs, such as increased heart rate when interventions take place.
- Dr A outlined what she saw as the burdens of OB remaining on the PICU. They included the risk of OB developing pneumonia due to his circumstances of being in bed, on a ventilator in circumstances where he is not moving or coughing to remove secretions. OB is no longer able to close his eyes, he can't blink to protect his corneas and now requires hourly eye drops. OB is becoming progressively stiff and more difficult to ventilate and breathe. His abdomen is rigid and his arms are in muscle spasm making it increasingly difficult to manage daily tasks such as dressing. His hands are fisted requiring rolls to prevent them closing up and damage being caused by his nails. Dr A considers he has difficulty absorbing food as his weight has not increased as it should have, and she considers when he does pass stools there are early signs of a mucosal prolapse. Dr A is aware that the parents have reported movement in OB's arms and legs but that has not been reported by the clinical team. Dr A said OB has clonus which looks like a shivering movement, she was clear that OB is not learning to move saying 'it is a sign of very serious injury' although she understood why the parents would want to interpret such movements in a different way.
- Ms Roper KC took Dr A through the recent weight and head circumference charts. She agreed the most recent weight showed OB had gained .325 kg from the weight he was when admitted in November 2024 but was clear it should have increased much more than that, even allowing for being on PICU. The difficulties experienced with OB's food is if it is increased too much he has loose stools, as he is not able to absorb the food. There was some variation in the head circumference which she said is largely 'operator dependant' and overall she regarded the head circumference measurements as static.
- As regards the parents' request for further time she said her conclusion is there will be no recovery due to the severity of the brain damage. In relation to any further scans she said they would only be undertaken to diagnose or for a prognosis. In this case the diagnosis is clear, namely a catastrophic ischaemic brain injury as is the prognosis. There has not been anything in her view that could justify further scans. Dr A also said there was no need to consider a transfer to another hospital as that could only be justified if what OB needed could not be provided where he is, which wasn't the position.
- When asked about the arrangements set out in the care plan if the court granted the declaration sought by the Trust she outlined the arrangements that could be made either at the hospital or the hospice, and what steps would need to be taken and the extent of the support that would be available. As no known cause of the cardiac arrest had been identified she expected there to be a referral to the coroner which provides an additional factor to consider if OB went to a hospice.
- Dr A recognised the devoted daily care that had been provided to OB by his mother and both parents active involvement in meetings that she accepts must have been difficult and distressing for them.
- Dr B's evidence focussed on the arrangements for palliative care which she outlined with great care. She met the parents on 20 December 2024. She and her team will be able to meet with the parents if the declaration is made to discuss options with them and what those arrangements would actually involve, which can include the hospice support coming to the hospital. Dr B recognised how difficult this will be for the parents if that is the court's decision and said there is continuing support available for the parents.
- The Trust obtained two second opinions from doctors based with another Trust. Dr C, Consultant in Paediatric Intensive Care Medicine visited OB on 5 December 2024. He concluded as follows:
"[OB's]'s condition reflects severe, irreversible, brain injury, resulting in loss of cerebral function, incompatible with long term survival. While some degree of brainstem recovery may occur, this would only allow for limited respiratory function and would not alter the underlying prognosis. My recommendation aligns with that of the [PICU] team:
• One-way extubation with transition to comfort-focussed care.
• Parental involvement in decision-making, including the option for extubation at home/hospice with palliative care support. This approach prioritizes [OB's] dignity, minimizes suffering and ensures the family receives appropriate support during this difficult time."
- The views of Dr D, Consultant Paediatric Neurologist, were also sought. He saw OB on 7 December 2024 and concluded as follows in his report:
"h. My overall opinion is that continuing medical care is futile. There is no hope that [OB] will improve and his health and neurological state with relentless decline. He cannot engage with his environment or parents in any way or to receive or demonstrate love in a meaningful way, nor to participate in play or other activities that give people pleasure and meaning. I accept he is unable to feel pain or demonstrate upset, but this is reflection of how severe his neurological disease is.
i.In my opinion, it is in his best interests to move towards a palliative care approach in which he is extubated and given medications to keep him comfortable, if required. I expect he would gasp and breathe for a period of time, which may be several hours, but then he would die in peace."
- The court granted permission for the parents to obtain their own expert, Dr Macintosh, Consultant in Paediatric Intensive Care. He saw OB on 7 February 2025. His report supports the conclusions of the treating clinicians and the second opinion doctors and concludes as follows:
"Benefits and Burdens to [OB]:
60.[OB] is currently protected from experiencing the burdens of his current treatment because of his lack of awareness and indeed lack of obvious sentience. Any recovery of these functions could mean that he would begin to experience the discomfort associated with his situation and the interventions it requires.
61.Other than maintaining the existence of life, there are no benefits. He has no signs of awareness and does not experience pleasure in even the simplest things available to him, such as feeding.
62.Given the time that that has passed since [OB's] brain injury I believe it is possible to predict what the long-term future would hold for him. He would need invasive ventilatory support and therefore 24 hour care.
63.He would not see, hear, move, feed or perhaps interact in any way. He would require to be fed by gastrostomy. He would have recurrent chest infections. He would have severe dystonia.
64.The burdens on him are only likely to increase over time.
Conclusions:
65.[OB] derives no benefit from the life that he is experiencing at the moment and I do not expect that he will come to derive any benefit in the future. Indeed it is likely that what will increase is the burden that he experiences as he accumulates more of the problems associated with chronic ventilation, chronic nutritional failure, recurrent infections and severe dystonia.
66.I have looked after many children who have experienced Out of Hospital Cardiac Arrests and [OB] is at the extreme of severity of neurological problems at this stage.
67.I believe that long term ventilation is not in his interest and that extubation without reintubation is appropriate and that his care should be re-directed towards palliation."
The Parents
- OB's mother filed a statement that clearly sets out her position and the reasons for opposing the order being sought by the Trust. She feels very strongly that there will be further recovery by OB if he is given more time, which is what she asks the court to do.
- In her view OB's heart is still beating and he is still breathing which she finds difficult to follow when told by the doctors that OB's brain is 'completely and entirely and irreparably damaged'. She said she has tried to understand this with the help of her solicitor and Dr Macintosh. In her statement she said 'When all life is precious and, to me, his life is especially so, I would ask only that he be given a little bit more time, in order to see whether he can improve. Doctors can be wrong, and do not always have all the answers: if they did, someone would be able to tell me why what happened on 18 November 2024 did.'
- She has attended hospital to be with OB each day and been closely monitoring his progress and said she was the one who recently sought out the dietician to come and assess OB, as a consequence he was given more milk. She drew attention to the fact that when he was weighed only a few days ago his weight had risen to be above what he was when he was admitted to hospital. This gives her ground for optimism about how OB could improve, which she says is also supported by the increase in his head circumference readings.
- OB's father also gave oral evidence. He has had to continue working for financial reasons but has taken part in meetings and attended hospital each day after work and when he is not working. He supported what OB's mother has said and fully supports the request for more time.
Children's Guardian
- Ms Demery has prepared a detailed report in this case. She was able to visit OB and speak with his parents on 27 January 2025. Ms Demery spent a number of hours at the hospital which gave her the opportunity to speak with Dr A, Dr BN and Dr R (Consultant Paediatric Neurologist), the Sister who had care of OB that day and the parents. In addition she was able to observe OB.
- In her analysis at the end of her report she concludes that OB 'does not have any quality of life. Whilst it is unlikely that he feels pain, conversely it seems [OB] does not derive any pleasure from or awareness of those around him. He is unable to experience the love and devotion of his parents, or to enjoy cuddles and being fed. The only benefit he derives is that of life itself.' While recognising the parents' Christian faith she considers the holistic needs of OB, noting that 'his experience of life is one overwhelmed by his tragic medical condition, and this must be balanced with any religious perspective. While [OB] is being cared for within a family which believes in God, [OB] is not of any age at which, prior to this injury, he was able to independently develop or express a religious faith'.
- In relation to burdens OB is experiencing Ms Demery outlined that even though OB does not appear to experience pain the treatment regime he has at the moment carried burdens and risks and he had deteriorated, for example in relation to his eyes and his relative failure to gain weight. As she notes she agrees with the medical evidence that 'appears clear that he is likely to develop further co-morbidities as time passes, so the burden on him and harm experienced will increase'.
- She carefully considers the request by the parents for more time but notes 'Dr Macintosh suggests that sufficient time has passed since [OB's] injury to allow a good assessment of recovery to reliably be made – and he does not identify any realistic prospect of [OB] recovering function. While [OB's] parents wish for more time with, and for, [OB] is understandable, the medical evidence is such that I cannot identify a welfare advantage to [OB] himself in delay. Any ongoing period of treatment would be a further period of [OB] being subject to the burden of treatment without benefit'.
Legal framework
- There is agreement between the parties as to the relevant legal framework. The relevant principles are now well established.
- The requirement on the Court in cases such as this is for the Court to exercise its independent and objective judgment as to what is in the child's best interests, factoring in the strong presumption to preserve life. The Court of Appeal in Re A (A Child) [2016] EWCA 759; [2016] All ER (D) 183 said the following at [31], with reference to Lady Hale's judgment in Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591 : " 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 [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."
And from [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."
- The Article 2, 8 and 14 rights of both O and his parents are engaged. The Court will also have regard to the UN Convention on the Rights of Persons with Disabilities, and UN Convention on the Rights of the Child. Unlike the ECHR, however, neither Convention is incorporated into the law of this country: Dance & Anor v Barts Health NHS Trust & Anor [2022] EWCA Civ 1055; Dance v Barts Health NHS Trust [2022] EWCA Civ 1106 citing the Supreme Court in R (on the application of SC, CB and 8 children) v Secretary of State for Work and Pensions and others [2021] UKSC 26.
- The relevant principles were summarised by MacDonald J in Manchester University NHS Foundation Trust v Fixler and others [2021] EWHC 1426; [2021] 4 WLR 95, at [56] – [62] and [69] - [74] and I bear them very much in mind.
- In Parfitt v Guy's and St Thomas' Children's NHS Foundation Trust & anor [2021] EWCA Civ 362 Baker LJ rejected the submission that there is no physical harm caused by the provision of medical treatment to a person with no conscious awareness, stating at [60]
"The proposition that no physical harm can be caused to a person with no conscious awareness seems to me to be plainly wrong. As I observed during the hearing, the law clearly recognises that physical harm can be caused to an unconscious person. In the criminal law, for example, an unconscious person can suffer actual or grievous bodily harm and it would be no defence to a charge under the Offences against the Person Act 1861 that the victim was unconscious. The judge was in my view entirely justified in citing examples from the law of tort in which it has been recognised that physical harm can be caused to an insensate person. As Mr Mylonas observed, if the proposition advanced on behalf of the appellant was correct, there would be no limit on a doctor's ability to perform any surgery upon any insensate patient. For my part, I fully endorse the judge's reasoning for rejecting the appellant's proposition at paragraph 76 of his judgment."
- I agree with the recent observations made by Poole J in Guy's and St Thomas' Children's NHS Foundation Trust & Anor v Knight & Anor [2021] EWHC 25 (Fam) regarding parental wishes, which were recently endorsed by Morgan J in Birmingham Women's and Children's Hospital NHS Foundation Trust v KB & Ors [2024] EWHC 3292 (Fam), In Knight Poole J stated at [98]
"… Counsel for Ms Parfitt submit that Holman J's "sweeping statement" in An NHS Trust v MB [see para. 22 above] that parental wishes are "wholly irrelevant" to the objective assessment of a child's best interests was "simply wrong". I am unaware of any authority in the fourteen years since his judgment that has expressly cast doubt on Holman J's view of the law, but I do take into account the judgment of the ECtHR in Gard and others v UK (above) to the effect that compliance with Art 2 of the European Convention on Human Rights does require the decision-maker to take into account the wishes of those close to the child when determining the child's best interests, perhaps all the more so in the case of a young child whose own wishes cannot be ascertained. I also bear in mind that Ms Parfitt has an Article 8 right to family life which ought to be considered. If so, parental wishes are not "wholly irrelevant". Nevertheless, an objective assessment of a child's best interests should not be confused with the satisfaction of a parent's wishes ..."
Submissions
- Mr Fullwood on behalf of the Trust recognises the strong presumption in favour of preserving life but in this case the countervailing factors mean that the court should conclude that OB's best interests are met by granting the Trust's application.
- He relies on the fact that the medical evidence, including the expert instructed on behalf of the parents, all reach the same conclusion. As regards the burdens for OB he summarises them as follows: (i) continuing treatment is inevitably burdensome and can be taken into account even where the evidence is that he is unlikely to experience pain; (ii) the multiple elements of the treatment mean that there is a continuing impact on OB's body; (iii) continuing treatment is futile as OB is unlikely to recover; and (iv) continuing treatment in circumstances which are futile compromises OB's dignity.
- The Trust recognise the parents devotion and their wishes and feelings. He submits when considering the evidence as a whole the medical evidence does not provide a foundation of support to the parents' request for more time.
- On behalf of the parents Ms Roper urges the court to permit the parents' request for a further period of time, up to three months, so they can feel confident everything has been done for OB. She submits their position needs to be considered in the context that OB had only been in their care for three weeks prior to the cardiac arrest. There remains no understanding what caused the cardiac arrest. OB is not in any pain and the burdens of continuing treatment need to be seen in that context. She submits the parents see small improvements as important and understandably find it hard to accept that OB's brain is not working yet he remains breathing and his heart beating.
- Mr Niven Phillips relies on the detailed analysis undertaken in Ms Demery's written report and her conclusion has not changed.
Discussion and decision
- All the evidence points towards the devotion of OB's parents. OB's mother has been at OB's bedside each day and stays overnight in accommodation provided by the hospital. She helps where she can in the day to day care of OB, and she rightly acknowledges the support for OB from the doctors and nursing team. OB's father attends hospital each day after work and he too is as involved in OB's care as he can be.
- One of the many tragic features of this case is the pregnancy went well, as OB's mother described in her oral evidence, as did the birth and OB was only in his parents care for three weeks before the cardiac arrest. There still remains no medical explanation as to why that cardiac arrest happened, which is an added difficulty in this case for the parents to manage.
- Both of OB's parents gave oral evidence. It must have taken very great courage for each of them to do so. They were able to explain their position very clearly and with understandable emotion. They ask for more time to see whether what they consider are changes in OB mean he will recover.
- Against the very powerful evidence that the parents gave I have to consider the medical and other evidence.
- The medical evidence is from a wide range of specialist paediatric consultants. They include the treating clinicians, consultants from a different Trust who gave a second opinion and the expert instructed by the parents. All those doctors reach the same conclusion that the extent of damage to OB's brain is so widespread and so severe that he will never recover. They all recognise that OB still retains a heartbeat and some breathing, albeit only with the support of a ventilator, but their evidence is united that the extent and severity of his brain injury is such that there is no response to any interventions and that will not change. Where the parents do disagree is with the severity of the injury and the interpretation of the scan results. They are of the view that OB would not take breaths and still have a heartbeat if the scans were as bad as reported. They are also concerned about an accidental extubation that occurred at the time of his first CT scan. The records note that the tube was immediately replaced and there is nothing to suggest it was any longer or caused any further injury. They also raised with Dr Macintosh whether further injury could have been caused during the stem cell tests, but he could find no evidence to support that from what he saw.
- Dr Macintosh, the parents' expert, is clear in his report that OB has been closely monitored since his admission in November 2024 and a further period of time is not justified as OB's position is unlikely to change.
- The court is required to stand back and consider all the evidence in considering and assessing what is in OB's best interests. I must very carefully weigh in the balance the strong presumption to preserve life. Both parents understandably place emphasis on this in OB's circumstances where they consider they have observed some changes and where, from their perspective, events have moved quite quickly. However, balanced against that is the medical evidence, which I accept, that the extent of OB's brain damage is so severe that he will not recover. I accept that evidence, as the conclusions reached by the treating clinicians have been considered independently by other doctors with the same expertise, as well as the expert instructed by the parents. I fully understand why the parents feel as they do but the reality of OB's position is that described by the medical evidence. I recognise that it is unlikely that he feels pain but I accept the evidence about the many burdens of the continuing treatment in the context of such treatment being futile.
- I accept the careful analysis undertaken by the Children's Guardian in her report that the declaration sought by the Trust is in OB's best interests.
- I have very carefully considered OB's parents very strong wishes and take them into account in considering the overall evidence but I have to remain focussed on what is in OB's best interests. There is no evidential basis for any further delay as the parents want.
- For the reasons set out above, with enormous sadness, I grant the declaration sought by the Trust.
