Protein drinks should have warnings about potential health risks, a coroner has said, after the death of a teenager with an undiagnosed genetic condition.
Rohan Godhania became unwell after consuming a protein shake and died after advice from neurologists suggesting he be tested for ammonia was ignored.
The 16-year-old’s condition deteriorated and he died two days later in August 2020, having suffered from undiagnosed Ornithine Transcarbamylase Deficiency (OTC) – a urea cycle disorder that prevents the breakdown of ammonia.
Ammonia is a waste product made by the body in the digestion of protein.
OTC allows ammonia to accumulate, rising to toxic levels where it affects the central nervous system.
He said supplements were “easily accessible to the general public” but current labelling failed to “adequately inform consumers” about the potentially fatal dangers posed to individuals with urea cycle disorder.
The inquest heard Rohan consumed a “high protein” drink and was admitted to West Middlesex Hospital on Aug 16, 2020, but his hyperammonaemia and OTC deficiency were not diagnosed.
Advice to screen for ammonia ignored
Advice from neurologists instructing him to be screened for ammonia was ignored, and he died two days later.
In his conclusion, Mr Osborne said failing to carry the test was a “lost opportunity” as it may “on the balance of probabilities have prevented his death”.
In a Prevention of Future Deaths report, the coroner revealed “matters giving rise to concern” that had arisen throughout Rohan’s inquest about the treatment of teenagers within the NHS and guidance for testing for ammonia.
One issue concerned whether teenagers aged 16-18 should be treated as adults and another was over “the lack of guidance for testing ammonia levels in patients who present in extremis with an unknown cause”.
Continuing his report, Mr Osborne said evidence throughout the inquest meant there was still “a risk that future deaths will occur”.
“High protein supplements and drinks are easily accessible to the general public, yet their labels fail to adequately inform consumers about the potential dangers posed to individuals with urea cycle disorders, such as Ornithine Transcarbamylase deficiency,” he wrote.
“This genetic disorder can lead to severe medical emergencies, requiring immediate medical intervention to prevent life-threatening complications.
“This disorder can be triggered by the sudden increased ingestion of protein.
“Consideration should be given as to whether the labels should prominently display a warning about the potential risks for individuals with an undiagnosed urea cycle disorder and include clear and concise information on symptoms of this and the importance of seeking immediate medical advice.”
In conclusion, he added: “In my opinion there is a risk that future deaths will occur unless action is taken and I believe NHS England and the Food Standards Agency have the power to take such action.”
He added that NHS England and the Food Standards Agency are under a duty to respond to the report by Oct 2.