Rohan Godhania: ‘Missed opportunity’ to test boy who died from rare disease | British News

It was a “missed opportunity” to perform a potentially life-saving test on a teenager who died from a rare genetic condition triggered by drinking a protein shake, a coroner said.

Rohan Godhania, 16, from Ealing, west London, fell ill after drinking the shake on August 15, 2020 and died three days later at West Middlesex Hospital of “irreversible brain damage”.

A post-mortem just over a week later could not determine his cause of death – a late onset of the rare disease ornithine transcarbamylase (OTC) deficiency, an investigation has found.

The reason for this was that his liver and kidneys were donated for a transplant before the mystery of his sudden illness could be solved.

The cause of death was only revealed months later when the liver recipient was hospitalized.

OTC prevents the breakdown of ammonia, which leads to lethal levels in the bloodstream and can be triggered by protein exposure.

Closing Rohan’s inquest at Milton Keynes Coroner’s Court in Buckinghamshire on Friday, Chief Medical Examiner Tom Osborne said: “I found Rohan was given a protein shake bought in a supermarket on August 15 and that triggered an acute reaction.”

“I find that Rohan was suffering from an OTC deficiency that was unknown to him and his family at the time.”

Calling Rohan’s death a “tragedy,” he added, “There is no doubt that this was a young man who had a bright future ahead of him.”

Mr Osborne said Rohan was admitted to West Middlesex Hospital, part of the Chelsea and Westminster Hospital NHS Foundation Trust, where the advice of neurologists at Charing Cross Hospital was taken, who said “he should be tested for ammonia”, but that test was not carried out.

In a narrative conclusion he said: “The deceased was admitted to West Middlesex Hospital on 16 August 2020.”

“His hyperammonemia and OTC deficiency were undiagnosed.”

“Failure to get a test for ammonia, which would have revealed the hyperammonemia, resulted in missing an opportunity for further medical treatment that, after weighing the probabilities, could have prevented his death.”

“He died on August 18, 2020.”

Doctors could not confirm the underlying cause of Rohan’s fatal brain swelling.

About six months after the transplant, the recipient of Rohan’s liver was hospitalized with symptoms including seizures and hyperammonemic encephalopathy, a metabolic disease caused by elevated levels of ammonia in the blood.

They had to be intubated and ventilated in an intensive care unit before their condition improved within days, the investigation found.

An independent expert later established the link between the two cases and a biopsy of tissue from the donated liver revealed that Rohan had suffered from OTC, which was then recorded as his cause of death.

The coroner now intends to issue two reports to prevent future deaths.

A report goes to the Food Standards Agency, calling for a health label to be added to the protein shake in question to make other OTC patients aware of the risk, even though the disease is rare.

He said: “It worries me that this product, this protein milkshake, is readily available.”

“It’s available online, you can buy it in bulk, you can buy it in supermarkets, and there’s no reference in the literature to the possibility of someone suffering from OTC responding to it.”

The other route is to NHS England, as Mr Osborne believes it should review guidance on treating patients aged 16-18.

The coroner repeatedly raised the question during the inquest whether 16- to 18-year-olds are “almost caught between two stands” when it comes to receiving pediatric or adult care.

Lawyers for Rohan’s family had argued he should have been transferred to Charing Cross Hospital, which has dedicated neurology and neurosurgery departments.

The investigation showed that the hospital could not accept him because he was a pediatric patient and not an adult.

In a joint statement following the investigation, Rohan’s parents, Pushpa and Hitendra Godhania, said: “When a child is taken to the hospital, you expect the system to pull out all the stops to save his life.”

“That didn’t happen in the Rohan case.”

“It took almost three years for our investigation to finally be heard. We firmly believe that the lack of transparency of the trust played a key role in the delay.

“Bereaved families should not have to struggle to be heard. We shouldn’t have to fight for information that should legitimately be available.

“Our experience shows the opposite of a just and learning culture.” We experienced a defensive and insensitive attitude. We were constantly told that there were no problems with Rohan’s care. However, no learning effect can be determined in the case of low-quality assessments.

“We believe the system has closed its ranks.” Meanwhile, children like Rohan are paying with their lives.

“Our ultimate goal has always been to identify deficiencies in the care of Rohan and ensure learning occurs so other families do not suffer a similar loss.”

“While the completion of the investigation marks some closure, as Rohan’s family we remain committed to greater transparency and improvements in the healthcare system.

“We hope that the lessons of Rohan’s case will contribute to meaningful changes that will help prevent such tragic deaths in the future.”

Fieldfisher’s Sarah Kingsley Fried, who represented the family at the inquest, said: “This inquest would not have happened without Rohan’s parents and their tireless pursuit of answers regarding their son’s death.”

“For almost three years they fought to ensure that the treatment he received warranted an investigation. It is now clear that they were right.”

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