FD2500652 - [2025] EWHC 2782 (Fam)

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.