Tyler Jay Ryan · Prevention of Future Deaths report

On 26ᵗʰ April 2022 the Senior Coroner opened an inquest into the death of Tyler Jay Ryan.

On 17ᵗʰ October 2023 I resumed and concluded the inquest.

Tyler Jay Ryan (born 02.09.2009) died at the Royal Victoria Infirmary, Newcastle upon Tyne on 12.02.2021 aged 11 years old.

Tyler had been found in his bedroom at his home address in a collapsed state by his mother on the morning of 12ᵗʰ February 2021. Police, Paramedics and the Great North Air Ambulance Service attended at the home address and attempted to resuscitate him. He remained asystole. He was conveyed to the RVI, Newcastle by Air Ambulance. Sadly, his death was pronounced after prolonged attempts to resuscitate him.

Post Mortem examination was carried out by ████████, Consultant Perinatal and Paediatric Pathologist at the RVI on 17ᵗʰ February 2021. His report was filed on 20ᵗʰ December 2021, over 10 months later. He concluded that the death was due to 1a) Acute Anaphylactic Shock. The family did not accept this conclusion on the basis that Tyler had no known medical history of allergies and no agent was identified to have triggered this reaction. The family contended that there must have been an undiagnosed and potentially hereditary underlying condition. Tyler had four surviving siblings and the family were concerned that they too may be at risk of sudden fatal collapse.

HM Senior Coroner for Newcastle instructed ████████, Consultant Paediatric Histopathologist to report as an independent expert. Her report is dated 15ᵗʰ August 2022. In her opinion, Tyler died of Sudden Unexpected Death in Childhood. She recommended that an analysis of Tyler’s tissue samples should be conducted to explore whether Tyler had an underlying genetic condition which may have caused an arrhythmia.

Genetic testing, via molecular autopsy, subsequently confirmed that Tyler had two variants in the gene RYR2. The scientific evidence strongly suggests that these variants are pathogenic and therefore expected to cause human disease. The RYR2 gene is known to be associated with a rare genetic condition, type 1 catecholaminergic polymorphic ventricular tachycardia “CPVT”. This condition can lead to the development of a potentially dangerous heart rhythm disturbance called Ventricular Tachycardia “VT”, usually when exercising or under conditions of stress or emotional arousal. VT can degenerate to Ventricular Fibrillation “VF”. VF is lethal if it is not corrected by defibrillation.

CPVT is a cause of sudden death in children and young adults with a mortality rate of up to 50% by the age of 30 years old if left undiagnosed and untreated. It is possible that Tyler’s siblings may have inherited this condition.

Having heard the evidence, I concluded that Tyler died of Sudden Unexpected Death in Childhood.

1. ████████ and ████████ each gave evidence that the delay in Paediatric Pathology reports is due to a chronic shortage in recruitment and retention of Paediatric Pathologists in the UK. This shortage is systemic. Currently only 50 out of 80 national vacancies for Paediatric Pathologists are filled. Coronial and Forensic work is undertaken by these Pathologists on a private basis, in addition to their NHS work. This provides insufficient time to carry out this work in a timely fashion. There is an acute shortage of Subspeciality Paediatric Pathologists, with just one Paediatric Orthopedic Pathologist undertaking Forensic and Coronial work in the UK.

2. The delay in Paediatric Pathology Reports results in the delayed detection of the need for genetic testing amongst surviving siblings of children who die of Sudden Death in Childhood. Currently, it is not until the Pathologist provides a report that the need for genetic testing is identified. Reports can take up to two years to be filed.

3. ████████ and ████████ gave evidence that more widespread use of molecular autopsy would assist in detecting genetic abnormalities in children who have died suddenly, leading to greater opportunities to prevent future deaths within their families and in other families.

4. ████████, Consultant Clinical Geneticist gave evidence that Tyler is, to date, the only human in history to have been found to have these two RYR2 variants which is significant to his family and to the wider scientific community. Greater use of molecular autopsy would save lives within families and in other families. The detection of these variants is directly relevant to others and the prevention of future deaths.

5. ████████ gave evidence that the development of the use of molecular autopsy calls for a revision of the SUDIC Protocol also known as the Kennedy Protocol.