My son died after drinking a protein shake – but our heartache could have been prevented
A 16-year-old boy died after drinking a protein shake, but his death could have been prevented, it turns out.
Rohan Godhania, from Ealing, west London, fell ill on August 15, 2020 with vomiting, confusion and stomach pain.
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His parents suspected he was allergic to the protein shake and never thought he would die three days later.
Friday marks the third anniversary of the death of the enthusiastic pianist and chess player.
Rohan’s mother Pushpa Godhania, 57, said: “I don’t think anyone ever gets over the loss of their child.”
“Also, now that it’s August, it’s almost reliving it, because this time of year almost reminds you of that awful weekend.
“It all comes back to you so easily without even trying, it feels like it was just yesterday. You’re still hoping he’ll come home and none of that is real.”
Rohan was admitted to West Middlesex Hospital, where it was found he had “irreversible brain damage” – but it wasn’t immediately clear why.
His parents, Pushpa and Hitendra, then faced the difficult decision of donating his organs immediately after the traumatic experience of losing their son.
Although Rohan’s cause of death was unknown, the family felt “pressure” to allow the use of his organs, although it was not clear what caused his sudden and unexpected death
More than a year later, the person who received her liver through organ donation was hospitalized with seizures.
A biopsy of tissue from the donated organ revealed Rohan had been suffering from a rare disease, which explained his death after drinking a protein shake.
A deficiency in ornithine transcarbamylase (OTC) was finally identified as the cause of death.
The rare genetic condition causes ammonia to build up in the blood, leading to deadly levels.
Ammonia is a normal waste product that is produced when proteins are broken down in the body. Without mining it is dangerous.
A low protein diet is recommended and therefore explains why a protein shake triggered Rohan’s disease.
This is a form of “urea cycle disorder” that occurs mostly in newborns.
But sometimes symptoms don’t show up until later in life.
American estimates put the infant mortality rate at 24 percent, rising to 11 percent thereafter.
Prevention was possible
When Rohan was admitted, the advice of neurologists at Charing Cross Hospital who said “he should be tested for ammonia” was followed.
That inquiry has not been conducted, Chief Medical Examiner Tom Osborne concluded at the conclusion of Rohan’s inquest at Milton Keynes Coroner’s Court in Buckinghamshire last month.
He called this a “missed opportunity” to give Rohan further medical treatment that “could have prevented his death.”
Mr Osborne said: “Failure to have an ammonia test, which would have revealed the hyperammonemia, resulted in missing the chance of further medical treatment which, considering the likelihood, could have prevented his death.”
It is now understood that Mr Osborne wishes to highlight the lack of guidance for testing ammonia levels in very ill patients. He has also called for health warnings to be added to protein shakes.
Ms Godhania suggested that people who are hospitalized with the same symptoms as Rohan should have an ammonia test.
Rohan was given drugs for encephalitis and meningitis, which cause inflammation of the brain, “immediately” because doctors suspected something was wrong with his brain.
But he wasn’t tested for ammonia.
Ms Godhania said: “I feel like a lot of people are dying needlessly because this is being overlooked and needs education about it, just as people are more aware of sepsis, more than at least OTC.”
Ms Godhania said there seemed to be “a reluctance (to do the testing)” and “[OTC] could be a silent killer, but people don’t realize it.”
Rohan’s mother and grandfather, Arshi Odedra, 84, were diagnosed with OTC after his death.
Ms Godhania said: “People of all ages can suffer from high levels of ammonia… So you have to recognize that if he does.” [Arshi] Ever been in the hospital and is confused. It’s not because he’s old, it’s because something has caused an ammonia crisis because he has over-the-counter medication and needs an ammonia test.
“It’s possible that people like him would die in the hospital and that would just be put down to him being a bit old.”
The family also want to know why their son’s organs were donated, as his sudden deterioration and death remained unexplained.
Ahead of the third anniversary of his death, Rohan’s mother said, “There are a lot of moments every day that I burst into quite a few tears and there are so many triggers in the house that all his belongings in the house haven’t changed.”
“I don’t have the heart to change anything so it’s all like he went on holiday. His bedroom is just the way it is, with all his school clothes, all his books, and his shoes in his shoe boxes.
“It all comes back to you so easily without even trying, it feels like it was just yesterday. You’re still hoping he’ll come home and none of that is real.”
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