M (Declaration of Death of Child)

Factual and Procedural Background

This application for permission to appeal concerns the tragic consequences following the difficult birth of a baby boy on 18 September 2019. After a normal full-term pregnancy, the child's mother went into labour en route to hospital where a prolapse of the umbilical cord occurred, cutting off oxygen supply to the baby's brain for a significant period. At birth, the child had an undetectable heart rate and no respiratory output but was resuscitated and placed on a ventilator in the neonatal intensive care unit (NICU).

Following two "death by neurological criteria" (DNC) assessments, treating doctors concluded that irreversible brain stem death had occurred by 20:01 on 1 October 2019. Despite this, the child's body remained on ventilatory support, continued to gain weight, and showed occasional limb movements, leading the parents to dispute the diagnosis of death and oppose withdrawal of ventilation.

The Manchester University NHS Foundation Trust ("the Trust") applied to the Family Division of the High Court on 26 November 2019 seeking a declaration that the child had no capacity to consent and that it was lawful to withdraw mechanical ventilation to allow a dignified death. The application was heard by Mrs Justice Lieven in January 2020, who granted the declaration in favour of the Trust but stayed the order to permit the parents to consider an appeal. The parents filed a notice of appeal, and the matter was adjourned for permission to appeal to be considered by the full court.

The Trust also obtained a Reporting Restrictions Order (RRO) preventing publication of the identities of medical professionals involved in the child's care, which the parents also sought to challenge on appeal.

Medical discussions with the parents began shortly after birth, with the parents refusing withdrawal of treatment due to religious beliefs. Several medical tests including EEGs and MRI scans indicated severe, irreversible brain injury consistent with brain stem death. Three separate DNC tests were conducted, all confirming brain stem death. Independent expert opinions supported these findings, concluding the child had no prospect of recovery and that continued ventilation was futile and undignified.

The court process included directions for expert evidence, appointment of a children's guardian, and refusal of the parents' applications to adjourn hearings to instruct further experts. The case was heard fully before Mrs Justice Lieven who made the declarations sought by the Trust.

Legal Issues Presented

1. Whether the child is legally dead according to the diagnosis of death by neurological criteria (DNC) and relevant clinical guidance.
2. Whether the ventilator can lawfully be removed following the diagnosis of death.
3. Whether a best interests assessment is required in cases where brain stem death has been diagnosed.
4. Whether the parents' consent was necessary or properly obtained for the DNC assessments.
5. Whether the parents were unjustly denied the opportunity to instruct their own expert evidence.
6. The validity and scope of the Reporting Restrictions Order protecting medical staff identities.

Arguments of the Parties

Appellant's Arguments

• The learned judge erred in law and fact by concluding the child was legally dead without conducting a best interests assessment.
• The judge erred in holding that consent had been given for the DNC assessments, thus failing to exclude that evidence.
• The trial did not satisfy Article 6.1 of the ECHR as the parents were denied the opportunity to instruct their own expert evidence.
• The Reporting Restrictions Order was made unlawfully, including conducting a balancing exercise without evidence.
• The judge placed incorrect weight on various Article 6, 8, and 10 rights of clinicians, the public, and the parents in relation to the Reporting Restrictions Order.
• The judicial approach should assess whether the medical practice is accepted by a responsible body of medical opinion, is reasoned and logical, and reflects an acceptable risk/benefit for the child, requiring a secure and firm conclusion of irreversibility.
• Comparative medical approaches, such as the US "whole brain death" standard, should be considered, including the use of ancillary confirmatory tests beyond UK bedside checks.
• Additional tests listed in the 2008 Code Appendix C should be undertaken to confirm irreversibility, given the gravity of the decision.
• The apnoea test is controversial and further mechanical tests assessing brain tissue perfusion should be conducted.
• The parents contend that brain stem death has not been conclusively established due to lack of additional testing.

Respondent's Arguments

• The Trust's position relies on the 2008 Code and established case law that brain stem death constitutes legal death.
• The DNC tests were conducted in accordance with clinical guidance, including the 2015 guidance for infants, and the parents were aware and consented by conduct.
• Additional tests beyond those required by the Code are unnecessary and can produce unreliable results; the child underwent two MRI scans and an EEG confirming the diagnosis.
• The child's brain had undergone liquefaction and disintegration, demonstrating whole brain death beyond the DNC criteria.
• The best interests test is irrelevant once brain stem death is established, as the child is legally dead.
• The refusal to adjourn hearings for further expert evidence was appropriate; the parents' chosen expert later confirmed the diagnosis on examination and review.
• The Reporting Restrictions Order was justified due to untrue and distressing allegations made against medical staff, and to protect staff from psychological harm exacerbated by potential social media exposure.
• Any delay in proceedings was reasonable to allow the parents legal representation and expert instruction; the Trust attempted mediation and other measures before court application.

Table of Precedents Cited

Court's Reasoning and Analysis

The court began by affirming that the central issue was whether the child was legally dead according to the DNC tests and relevant clinical guidance, and if so, whether ventilatory support could lawfully be withdrawn. It emphasized that once brain stem death is established, the best interests test is no longer relevant because the individual is legally dead.

The court reviewed the 2008 Code of Practice and the 2015 Royal College of Paediatrics and Child Health guidance, both of which set out clear neurological criteria for diagnosis of brain stem death, including specific physical tests and the apnoea test. It noted that the 2008 Code does not apply to infants under two months but the 2015 guidance fills this gap with modified protocols.

The court examined the medical evidence, including three DNC tests conducted by qualified consultants, two MRI scans showing catastrophic brain injury and liquefaction, EEG results indicating no cerebral activity, and an independent expert opinion confirming no prospect of recovery. It accepted that observed limb movements were spinal reflexes without neurological significance.

In addressing the parents' arguments, the court rejected the submission that a best interests analysis was required, relying on binding authority from the House of Lords and recent Family Division decisions. It found the parents' challenge to consent for the DNC tests without merit, as the parents were informed and did not object, and subsequent tests were conducted with their presence and consent.

The court declined the call for further ancillary tests beyond those required by the Code, considering existing imaging and EEG evidence sufficient and noting that additional tests could produce unreliable results. The extensive brain disintegration evident in MRI scans further negated the need for further testing.

Regarding the Reporting Restrictions Order, the court found the order justified due to untrue and distressing allegations made by the father against medical staff, the potential psychological harm, and the modern realities of social media exposure. It acknowledged that while openness is important, protecting the identities of hundreds of clinicians was necessary here.

The court also addressed procedural delay, explaining that the time elapsed was partly due to efforts to engage with the parents and provide legal representation, expert instruction, and mediation opportunities before hearing, and found no basis for criticism.

Ultimately, the court concluded that the evidence was overwhelming that the child was brain stem dead according to established UK criteria and that the declarations sought by the Trust were appropriate. It refused permission to appeal on all grounds.

Holding and Implications

The court's final decision was to REFUSE PERMISSION TO APPEAL on all five grounds raised by the parents.

The declarations made by the lower court were to be amended to align with the preferred form used in prior cases, explicitly stating the time and date of death and authorizing lawful withdrawal of ventilation and related clinical interventions to allow dignity in death.

The Reporting Restrictions Order was to be modified to expire twenty-eight days after ventilation removal, subject to further application by either party.

The direct effect of this decision is to uphold the legal recognition of brain stem death as the criterion for death in the UK, permitting withdrawal of life-sustaining treatment in such cases without the need for a best interests assessment. No new legal precedent was established, but the judgment represents the first occasion these issues have been addressed at the Court of Appeal level, reinforcing existing legal and medical standards.