A boy who died after drinking a protein shake from a rare genetic condition could have been saved if he had been tested, an inquest has found.
Rohan Godhania was 16 when he fell ill after drinking the milkshake in August 2020; he died three days later in hospital after suffering “irreversible brain damage”.
An autopsy initially failed to identify what caused the west London the teenager’s death, but it was revealed months later that he died from the late onset of a rare disease after his liver and kidneys were donated to a hospital for a transplant.
He had an ornithine transcarbamylase (OTC) deficiency which prevents ammonia gas from breaking down in the bloodstream causing a lethal build-up and which can be triggered by ingesting protein.
Chief Coroner Tom Osborne said Rohan was admitted to West Middlesex Hospital after the reaction to the shaking.
Neurologists at Charing Cross Hospital were consulted who said “the ammonia test should be done”, but no such test was carried out.
Rohan Godhania with parents Pushpa and Hitendra Godhania
‘A missed opportunity’
Mr Osborne said: “I believe Rohan was suffering from an over the counter deficiency which he and his family were unaware of at the time.
“His hyperammonemia and free-selling deficiency were undiagnosed.
“The failure to perform an ammonia test that would have revealed hyperammonemia resulted in a missed opportunity for further medical treatment which, on the balance of probabilities, could have prevented his death.”
Lawyers for Rohan’s family had argued he should have been transferred to Charing Cross Hospital, with its neurology and neurosurgery departments.
The inquest heard the hospital could not admit him because of his age. Rohan was a pediatric patient rather than an adult.
The coroner raised the question of the intermediate nature of 16- to 18-year-olds when it came to receiving pediatric or adult care.
The transplant patient suffers from ammonia-induced seizures
Six months after Rohan’s liver transplant, his recipient was brought to the hospital with similar symptoms, including seizures caused by increased ammonia in the blood.
Their condition improved over several days, but they were required to remain in intensive care under intubation and ventilation, the inquest found.
Read more:
‘Angelic girl’: Nottingham attack victim’s father gives moving eulogy
Billionaire’s Row fire: Firefighters tackle blaze at ‘abandoned’ mansion.
“Kids like Rohan pay with their lives”
Rohan’s parents felt there was a “lack of transparency” from the hospital trust which dragged out the investigation.
They said: “Bereaved families shouldn’t have to fight to be heard. We shouldn’t have to fight for information that should be available properly.
“Our experience shows the opposite of a fair and learning culture. We experienced a defensive and insensitive attitude. We were constantly told there were no problems with Rohan’s care.
“We believe the system closed ranks. Meanwhile, kids like Rohan are paying with their lives.”
They said the inquest’s verdict provided them with “some closure” but that they would continue to campaign for “greater transparency and improvements within the health system”.
Meanwhile, the coroner is aiming for the Food Standards Agency to add a health warning to “readily available” protein shakes.
