Nuel-Junior DZERNJO · Prevention of Future Deaths report

On 11 April 2023 I commenced an investigation into the death of Nuel-Junior DZERNJO aged 10. The investigation concluded at the end of the inquest on 30 November 2023. The conclusion of the inquest was that:

Narrative Conclusion

The medical cause of death was confirmed as:

1a Varicella Zoster Infection
1b Immunosuppression
1c Steroid Therapy

Nuel-Junior Dzernjo was a ten year old boy who had been under investigation for a neurodegenerative condition having been noted to have seizures on an Electroencephalogram. There was no clear cause or diagnosis for the seizures but it was felt that he was suffering from electrical status epilepticus during slow-wave sleep. In November 2022 a decision was made to commence him on high dose steroids, a known consequence of which was immunosuppression.
He developed signs of chicken pox on Friday 17 February 2023 and was brought to his community paediatric appointment on 20 February 2023 but not seen and assessed as he was known to have a contagious disease. He was seen later that day by a nurse at his general practitioner surgery and was seen and sent home. A later discussion between a general practitioner at the surgery and the community paediatrician led to a referral to the paediatric assessment unit at Ipswich hospital. The unit was busy and an appointment was not made until the following morning.
By 11am on 21 February 2023 Nuel had deteriorated further and his parents had to support and carry him to the paediatric assessment unit arriving at 11.05am. Observations taken at 11.30am revealed he was pyrexial, tachycardic and tachypnoeic but the sepsis pathway was not followed. He was prescribed paracetamol at 12.15 and seen by a paediatric registrar who did not consider the sepsis protocol should be initiated as there was a clear cause for his symptoms i.e chicken pox.
The plan was made to observe him, recheck his observations and if he had improved to send him home with oral Acyclovir. At 13.20 he remained pyrexial and tachycardic and his respiratory rate was still high at 32 and he was prescribed Ibuprofen. By 15.30 his temperature had come down and his heart rate had settled but was still high at 118, as was his respiratory rate at 29. He was also unable to mobilise having previously not being limited with his mobility. He was confused but this was considered to be his usual presentation due to his neurodegenerative condition. The doctor who planned to discharge him did not discuss him with a Consultant and was not aware he needed a wheelchair to leave hospital having had no issues with his mobility prior to the onset of his current viral illness.
He was taken home by his parents and was unable to swallow his oral medication and took very little by way of fluids. He deteriorated the following day and collapsed shortly before 2pm. His parents called emergency services and police and paramedics attended. Despite attempts at resuscitation including in the emergency department at West Suffolk hospital he died later that afternoon. A post mortem revealed he had died as a consequence of Varicella Zoster.

During the course of my investigation into the death of Nuel-Junior I instructed an independent paediatric expert to review his management and opine on causation. During the course of hearing the evidence from the expert and all of the treating clinicians it became clear that there was some potentially relevant guidance available but it lacked clarity. Here intravenous Acyclovir, if prescribed, may have prevented Nuel-Junior's death but he was instead prescribed oral Acyclovir which was unlikely to have made a difference. Had clear guidance been available then Nuel-Junior's death may have been prevented.