FD2500652 - [2025] EWHC 2782 (Fam)

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).