Pritesh Rathod, instructed by Sarah Kingsley-Fried of Fieldfisher, represented the family of 16 year old Rohan Godhania. He died after suffering from hyperammonaemia (an accumulation of ammonia in the blood) and consequent encephalopathy as a result of an undiagnosed urea cycle disorder (ornithine transcarbamylase (‘OTC’) deficiency) which meant that his liver was unable to metabolise large amounts of protein properly.

Rohan, a high-achieving student from Ealing, West London, had consumed a protein shake commonly available in supermarkets.  He became unwell, vomiting and acting out of character.  On Sunday 16th August 2020, he was taken by ambulance to West Middlesex Hospital, where he was admitted as an adult patient.  His neurological condition deteriorated.  West Middlesex Hospital contacted the neurology out of hours service at Charing Cross Hospital for advice.  The precise nature of the advice given was a matter in issue for the Coroner to determine (in particular, whether advice had been given to carry out an ammonia test or not).  A transfer was considered but could not be achieved because there were difficulties in establishing whether he should be transferred to adult or paediatric neurology.

Rohan was admitted to ITU where he was sedated and intubated.  His condition continued to get worse with doctors being unable to find a cause.  Sadly, brain stem death was confirmed on 18th August 2020.  Rohan was considered to be a candidate for organ donation.  Notwithstanding the fact that the cause of death was not known, the then Senior Coroner for West London authorised organ donation.  His liver and pancreas were donated.  A coronial investigation was commenced as the cause of death was unknown.

Around 6 months later, the recipient of Rohan’s liver also presented to hospitals with similar symptoms of vomiting and neurological deterioration, requiring admission to ITU and intubation.  Fortunately, the hospital on this occasion established that the recipient was suffering from hyperammonaemic encephalopathy.  They were able to correct the ammonia level and the recipient went on to make a full recovery.  A biopsy of the liver was taken.  The hepatology team treating the recipient contacted a specialist in Adult Inherited Metabolic Disease as they queried whether the recipient had an inherited disease.  The liver biopsy revealed a gene variant which can cause late-onset presentation of OTC deficiency (a rare, X-linked urea cycle defect).  Coincidentally, a neurologist who was involved in Rohan’s care had also contacted the same Inherited Metabolic Disease specialist querying whether Rohan’s death was because of an underlying inherited metabolic disease.  The specialist recognised the similarities and put the two teams in touch.  It was established that the recipient had received Rohan’s liver.  The cause of death for Rohan had therefore been found – a late presentation of OTC deficiency causing hyperammonaemic encephalopathy.

At the Inquest, held before Mr Tom Osborne, HM Senior Coroner for Milton Keynes (to whom the inquest had been transferred from the West London Coroner’s Court), concerns were raised by the family as to whether Rohan’s condition could have been diagnosed and treated sooner.  The Coroner found that the neurologists at Charing Cross Hospital advised carrying out an ammonia test but that this advice was not heeded and as such, the test was not carried out.  The Coroner found that there was a lost opportunity to render further medical treatment that may, on the balance of probabilities, have prevented Rohan’s death.

The Coroner decided to issue a prevention of future death (regulation 28) report to the Food Standards Agency to consider whether warning labels should be placed on protein shakes about the risk of having a violent reaction.  The Coroner was also concerned about the appropriate care of 16-18 year olds and remarked during the inquest that they were at risk of “falling between two stools”.  He issued a further regulation 28 report to NHS England asking them to review the guidance relating to this cohort of patients.

The inquest proceedings also considered:-

  1. The question of whether article 2 applied, it being one of the first inquests to be held after the Supreme Court’s decision in Maguire v HM Senior Coroner for Blackpool & Fylde [2023] UKSC 20 (the inquest resumed the day after the Supreme Court handed down its decision);
  2. The propriety of authorising organ donation before the cause of death is known (as it happens, the Chief Coroner’s Guidance on Organ and Tissue Donation (No. 26) was revised extensively a week prior to the resumption of the Inquest and now contains substantial guidance to Coroners about the need to consider whether the organ being considered for donation contributed to death).

The proceedings were covered by both domestic and international media outlets. Press coverage can be found here: