The mother of a teenager whose life could have been saved had he been tested for ammonia in hospital hopes changes will soon be made to stop other patients “dying unnecessarily”.
Three years ago this week, Rohan Godhania, 16, of Ealing, west London, fell ill after drinking a protein shake on August 15 2020.
He died three days later at West Middlesex Hospital after suffering “irreversible brain damage”.
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.
Rohan was admitted to West Middlesex Hospital, part of Chelsea and Westminster Hospital NHS Foundation Trust, where advice was taken from the neurologists at Charing Cross Hospital, who said “he should be tested for ammonia”.
This screening was not carried out, senior coroner Tom Osborne concluded at the end of Rohan’s inquest at Milton Keynes Coroner’s Court in Buckinghamshire last month.
He called this a “lost opportunity” to give Rohan further medical treatment that could have “prevented his death”.
It is now understood Mr Osborne intends to highlight the lack of guidance for testing ammonia levels in very ill patients in a prevention of future deaths report due to be sent to NHS England and NHS Improvement.
He is expected to call for clear protocols for conducting ammonia screenings, interpreting the results and making decisions based on them, and to ask for this guidance to be shared with all emergency departments.
Rohan’s mother Pushpa Godhania, 57, would welcome such a move.
She told the PA news agency: “The key message is ammonia testing is really important and I believe that it is not just for rare conditions, there’s other conditions that they’re missing, there’s a whole lot of conditions that affect the liver and kidneys, although I’m not an expert.
“A lot of people are dying unnecessarily, I feel, because this is being missed and there needs to be education about it, just the way people are more aware of sepsis, more than at least OTC.
“Meningitis, encephalitis, those are usually on the radar of emergency departments, they do miss them sometimes but those things are considered, but doing an ammonia test and metabolic disorders, there seems to be a reluctance (to do the tests).
“It could be a silent killer but people don’t realise it.
“I think it is about time that this test is now used in ED (emergency departments) and I hope NHS England are putting good measures for the emergency departments to actually take on board and take it seriously.”
She suggested people admitted to hospital who are vomiting, have an altered mental state such as confusion, and possibly abdominal pain, all symptoms Rohan suffered, should undergo an ammonia test.
She said Rohan was put onto medication for encephalitis and meningitis, which cause inflammation of the brain, “straight away”, because doctors suspected there was something wrong with his brain. But he was not tested for ammonia.
Mrs Godhania suggested people with suspected meningitis or encephalitis should also tested for ammonia in future, saying this could “save a life”.
She added: “People of any age can suffer with high ammonia levels, so for example I have the genetic condition as well, I’m a carrier, my dad who’s 84, Rohan’s grandad, has the same condition.
It all comes back to you so easily without even trying, it feels like it was just yesterday. You still hope that he's going to come home and none of this is real— Pushpa Godhania on her son's death
“So, they need to recognise that if he ever went into hospital and is confused it is not because he’s old, it could be because something has pushed an ammonia crisis because he’s got OTC and needs his ammonia tested.
“It’s possible that people like him would die in hospital and it would just be put down to, he was a bit old.”
Mrs Godhania and her father Arshi Odedra were both diagnosed with OTC after Rohan’s death.
Rohan’s post-mortem examination on August 28 2020 could not ascertain his cause of death because his liver and kidneys were donated for transplant while his sudden illness remained a mystery.
It was only months later when the recipient of his liver was admitted to hospital that a biopsy on tissue from the donated organ’s established that Rohan had suffered from OTC, which was then recorded as his cause of death.
Friday will mark three years since Rohan’s death.
“I don’t think anyone ever gets over the loss of their child,” Mrs Godhania said.
“There are plenty of moments every day where I get quite tearful and so many triggers around the house, all his belongings around the house haven’t changed, I don’t have the heart to change anything so everything is as if he has gone away for holiday. His bedroom is exactly as it is with all his school clothes all his books, his shoes are in his shoe draws.
“Also, now being August, you almost relive it because this time of the year almost reminds you of that horrible weekend.
“It all comes back to you so easily without even trying, it feels like it was just yesterday. You still hope that he’s going to come home and none of this is real. ”
In a narrative conclusion delivered on July 21, Mr Osborne said: “The deceased was admitted to West Middlesex Hospital on August 16 2020.
“His 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 died on August 18 2020.”
