A boy who died after consuming a protein shake because of a uncommon genetic situation may have been saved had a check been carried out, an inquest has been informed.

Rohan Godhania was 16 when he fell unwell after consuming the shake in August 2020 - he died three days later in hospital after struggling "irreversible brain damage".

A autopsy couldn't initially determine what triggered the west London teenager's demise, however months later it was revealed he died because of late onset of a uncommon illness after his liver and kidneys had been donated to a hospital for transplant functions.

He had ornithine transcarbamylase (OTC) deficiency which prevents ammonia gasoline from breaking down within the bloodstream inflicting a deadly buildup - and might be triggered by ingesting protein.

Senior coroner Tom Osborne mentioned Rohan was admitted to West Middlesex Hospital after the response to the shake.

Advice was taken from neurologists at Charing Cross Hospital who mentioned "he should be tested for ammonia", however this check was not carried out.

'A misplaced alternative'

Mr Osborne mentioned: "I find that Rohan suffered from OTC deficiency that was unknown to him and his family at the time.

"His hyperammonaemia and OTC deficiency was not recognized.

"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."

Lawyers for Rohan's household had argued he ought to have been transferred to Charing Cross Hospital, with neurology and neurosurgery departments.

The inquest heard the hospital couldn't admit him because of his age. Rohan was a paediatric affected person relatively than an grownup.

The coroner raised the query of the in-between nature of 16 to 18-year-olds when it got here to them receiving both paediatric or grownup care.

Transplant affected person suffers ammonia-induced seizures

Six months after Rohan's liver was transplanted, its recipient was taken to hospital with related signs together with seizures attributable to elevated ammonia within the blood.

Their situation improved over some days however they had been required to remain in intensive care beneath intubation and air flow, the inquest heard.

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'Children like Rohan pay with their life'

Rohan's dad and mom felt there was a "lack of transparency" from the hospital belief which extended the inquest.

They mentioned: "Bereaved families should not have to fight to be heard. We should not have to fight for information that should be rightfully available.

"Our expertise reveals the alternative of a simply and studying tradition. We skilled a defensive and insensitive perspective. We had been consistently informed that there have been no points with Rohan's care.

"We believe the system closed ranks. In the meantime, children like Rohan pay with their life."

They mentioned the inquest's verdict offered them with "some closure" however they might proceed to marketing campaign for "greater transparency and improvements within the healthcare system".

Meanwhile, the coroner goals for a well being warning to be added to "readily available" protein shakes by the Food Standards Agency.