A mother says a health warning must be added to a protein shake that 'triggered an acute reaction' in her teenage son before he died.
Rohan Godhania, of Ealing, west London, fell ill after drinking a protein shake on August 15, 2020, the brand of which has now been revealed.
The 16-year-old died three days later at West Middlesex Hospital after suffering 'irreversible brain damage'.
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His cause of death was eventually identified as a late onset of the rare disease ornithine transcarbamylase (OTC) deficiency.
The urea cycle disorder prevents the breakdown of ammonia, causing it to build up to lethal levels in the bloodstream, and can be triggered by a protein load.
At the end of the inquest into Rohan's death at Milton Keynes Coroner’s Court in Buckinghamshire last month, senior coroner Tom Osborne said drinking the protein shake had 'triggered an acute reaction' in the teenager.
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He indicated he would be sending a prevention of future deaths report to the Food Standards Agency (FSA).
The report is yet to be issued but it's understood it will ask the FSA to consider whether the labels of high-protein drinks and supplements should feature a prominent warning about the potentially fatal risks a sudden spike in ingested protein can pose to people with undiagnosed urea cycle disorders, such at OTC.
This would detail symptoms to look out for and stress the need to seek urgent medical help if they develop, despite the rarity of the disease.
Ahead of the anniversary of her son's death this week, Pushpa Godhania revealed the shake was made from a tub of Ultimate Sports Nutrition (USN) protein powder purchased from Tesco.
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The USN Core Series 100% Premium Whey Protein product contained 23g of protein per 34g serving and Rohan had just under a single scoop made with 200ml water, his parents said.
Writing on the tub said 'consult your doctor prior to use if you have a medical condition' but Rohan's OTC was undiagnosed.
Pushpa has now urged the company to add the additional warning in the hope it could save others.
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In a message to USN, she told the PA news agency: “They should put a warning on there that if anybody ends up having vomiting as a result of it and starts feeling unwell they should immediately get emergency attention and ask them to do an ammonia test.”
Pushpa said she is considering contacting USN directly to ask them to add the warning.
She added: “I don’t know what it is in protein shakes that does push up, whatever it is, the condition. Because Rohan is not the only case, I think there has been other similar cases with protein shakes, so yeah I plan to write to them and at least see what the response is, at least then people who buy it can see the warning.
“The general public wouldn’t really understand if you say, you might have OTC or a urea cycle disorder, but if we just say if you feel very sick and you’re vomiting as a result of this, ask for an ammonia test, put it into some very simple language, then that would help.”
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At the conclusion of the inquest on July 21, Osborne said: “It does concern me that this product, this protein milkshake, is readily available.
“It’s available online, you can buy it in bulk, you can buy it in the supermarket and there is no mention on the literature of the possibility of someone who suffers from OTC having a reaction to it.”
During the inquest, Dr Christopher Carswell, a consultant neurologist, said he thought a health warning should be added.
“Consumers should be able to make an informed decision about taking that product,” he said.
“Although it’s rare, the potential hazard is massive.”
USN has been approached for comment.
In the conclusion to the inquest, Osborne said Rohan's 'hyperammonaemia and OTC deficiency' was not diagnosed.
“The failure to carry out a test for ammonia that would have revealed the hyperammonaemia resulted in a lost opportunity to render further medical treatment that may, on the balance of probabilities, have prevented his death," he said.