FD25P00441 - [2025] EWHC 2100 (Fam)

The written and oral evidence from the two clinical leads for Z, Dr A and Dr B, provided a comprehensive account of Z’s relevant medical history and current position. Dr A considers Z has a poor overall prognosis. As he graphically described the position in his evidence, Z has no prospect of recovery, he is dying and is dying slowly. Their evidence outlined the many complications Z has had to deal with, such as two cardiac arrests, the difficulties with nutrition, securing lines, the recent blood clot and the impact for Z of the medical interventions required to treat each of those complications. Even though it is possible to treat individual complications as they arise, each time Z becomes weaker and more frail only to await the next medical issue that is inevitably going to arise.

Both Dr A and Dr B in their written and oral evidence were clear that the evidence did not support any prospect of improvement in Z’s condition.

Dr A stated in his statement “It is the collective opinion of the PCCU consultant body that the continuation of full intensivecare interventions for [Z] is not in his best interests. He has a severe brain abnormalitythat is not compatible with long term survival beyond intensive care or without recurrentepisodes of intensive care, and any attempts to prolong life through aggressive treatmentwould result in significant suffering without altering the outcome.”

As to Z’s level of consciousness and awareness Dr B set out in his statement

“..there is no sign of activity detectable on EEG. This implies the cortex is not functioning atall and I suspect that the cortex that he did previously have has been injured to an extent thatit is no longer able to support normal neurological functions”

His brainstem function is abnormal....temperature regulation and the gag reflex are impaired

Consciousness is a complex phenomenon...there are significant limitations on the currentscientific understanding of consciousness which is mostly based on.... adults....and it maytherefore be of very limited relevance to very young children especially those with pre-existingneurological abnormalities such as [Z]

[Z] does not display any awareness of the world around him except to respond to unpleasantphysical stimuli with a dystonic reaction and possibly to calm down when his parents massagehim

It has not been possible to exclude some low level awareness....that is being mediated by hisbrainstem and enabling him to respond to physical touch and pain

It is my opinion that the responses we are seeing...are involuntary reflex responses ....withoutconscious awareness

...he does experience pain”

This view is supported by Dr A. Dr B had viewed the videos relied upon by the parents which showed Z being soothed by their massages, of Z making independent movement with his arms and being able to gag. Whilst Dr B did not dispute the content of the videos, they were only very short periods, mostly under a minute, and did not reflect the detailed nursing observation records. Dr B described that when his parents touched Z it would be recognised by the limited function in Z’s brain, but due to the extent of the damage to his brain within a short period Z would then revert to exhibiting dystonic and myoclonic movements. Dr B states that Z is severely disabled and ‘totally unaware of the world around him except for some sensation of touch which is often painful and unpleasant for him’.

The Trust’s clinical team consider that Z’s gut will never recover and Z would require TPN possibly permanently, which carries increasing risks over time from severe infections or liver failure.

Dr D, Consultant Paediatric Neurologist, stated in his report dated 7 July 2025 that ‘the overall severity of [Z’s] brain dysfunction is life limiting. I do not believe there is any realistic prospect of recovery or improvement for [Z] with regards to his neurological function, developmental prognosis or awareness of the world around him. He will remain entirely dependent upon others for all aspects of his daily care throughout his life.’ Continuing later in his report stating, ‘I do not believe that [Z’s] current neurological condition is consistent with a sustained ability to maintain his life, and there is no realistic prospect of improvement or recovery in the future’.

The evidence about Z’s life expectancy is extremely difficult to predict. If Z remains in receipt of treatment, he remains at risk of the many complications that could arise due to his current position, which could result in his death. As Dr A observed ‘the invasive ventilation is only delaying an inevitable death due to the nature of his brain condition’. Dr C stated ‘It is almost certain that he would develop a complication of this ongoing therapy (for example sepsis from central venous access, ventilator acquired pneumonia) were it to continue’. If ventilation is removed, he may be able to breathe on his own but his life expectancy would be limited as he would not be receiving TPN, although would still be receiving hydration. If he was unable to breathe on his own to sustain life he would be expected to pass away relatively quickly. At any point Z could experience an event that could result in his death, for example by an overwhelming infection or an electrolyte imbalance leading to a cardiac arrest. The clinicians have made it clear if the declaration was made ‘The clinicians would continue to be guided by the observations of [Z’s] parents, who have been very good at advocating for [Z] when they feel he is in pain and distressed. At the same time, the clinical team that is looking after him would be able to use their clinical judgement which is based on appearance, heart rate, blood pressure, sweating and posture. These are only some of the observations that may be used’.

In their written statement the parents make it very clear why they consider Z should continue to receive treatment based on Z’s right to live, and, what they consider to be changes they have observed which give them hope that he may recover. As they set out in their statement they want to give him ‘the best chance of survival’.