- Wednesday, November 29, 2023
The coroner’s investigation revealed that Rohan’s condition was linked to ornithine transcarbamylase (OTC) deficiency, a condition that hinders the breakdown of ammonia
By: Kimberly Rodrigues
A 16-year-old resident of Ealing, west London, named Rohan Godhania tragically died after drinking a protein shake he purchased from a supermarket on August 15, 2020.
Rohan fell ill after consuming the protein shake and died three days later, succumbing to irreversible brain damage due to a rare genetic condition triggered by the drink, The Daily Mail reported.
The coroner’s investigation revealed that Rohan’s condition was linked to ornithine transcarbamylase (OTC) deficiency, a condition that hinders the breakdown of ammonia, leading to dangerous levels in the bloodstream.
OTC deficiency can be activated by a high protein intake.
During the inquest at Milton Keynes Coroner’s Court in Buckinghamshire, senior coroner Tom Osborne concluded that Rohan’s acute reaction (irreversible brain damage) was triggered by the protein shake he consumed on August 15.
Additionally, a post-mortem examination conducted on August 28, 2020, could not determine the cause of Rohan’s death.
However, it was later discovered that he had succumbed to a late onset of OTC deficiency.
Unfortunately, doctors missed a crucial opportunity to carry out a test for ammonia, which could have potentially saved his life.
Rohan’s liver and kidneys were donated for transplant before the mystery behind his sudden illness was uncovered, making it difficult to determine the cause of death during the post-mortem examination.
In his narrative conclusion, Osborne said that Rohan was admitted to West Middlesex Hospital, which is part of Chelsea and Westminster Hospital NHS Foundation Trust.
During his stay, advice was sought from neurologists at Charing Cross Hospital who recommended testing for ammonia, but this crucial test was not conducted.
The coroner highlighted that Rohan’s hyperammonaemia and OTC deficiency were not diagnosed during his time at the hospital.
The failure to carry out the ammonia test was deemed a missed opportunity, as it could have potentially led to further medical treatment that might have prevented his death.
Rohan ultimately died on August 18, 2020.
Despite extensive efforts, doctors were unable to ascertain the underlying cause of Rohan’s fatal brain swelling.
Months later, the recipient of Rohan’s liver was admitted to the hospital with symptoms linked to OTC deficiency.
Subsequently, an independent expert identified the connection between the two cases, leading to a biopsy on tissue from the donated liver.
The findings from the biopsy confirmed that Rohan had suffered from OTC deficiency, which was subsequently recorded as the cause of his death.
The coroner intends to issue two prevention of future death reports.
One report calls for a health warning on the protein shake to alert other OTC sufferers of the risk, despite the disease’s rarity.
The other report will be directed to NHS England, urging a review of the guidance for treating patients between the ages of 16 to 18.
Throughout the inquest, the coroner consistently highlighted the concern of 16 to 18-year-olds “almost falling between two stalls” in terms of receiving appropriate medical care, whether it be paediatric or adult care.
Lawyers representing Rohan’s family contended that he should have been transferred to Charing Cross Hospital, known for its specialised neurology and neurosurgery departments.
However, it was revealed during the proceedings that the hospital was unable to accept him as he fell under the category of a paediatric patient rather than an adult, raising questions about the suitability of care for individuals in this age group.
Rohan’s parents have expressed their disappointment in the healthcare system and called for greater transparency and improvements to prevent similar tragedies in the future.
Sarah Kingsley Fried, a representative from Fieldfisher, who appeared on behalf of the family during the inquest, said that the inquiry would not have taken place if it were not for the relentless determination of Rohan’s parents to seek answers about their son’s tragic death.
Over the course of almost three years, Rohan’s parents persevered in their efforts to demonstrate that the care provided to their son warranted thorough investigation. The outcome of the inquest now confirms their belief that they were indeed correct in their pursuit.
