Organ transplant given go-ahead despite mystery death of donor
Recipient’s sudden illness identified as condition that killed teenager, as NHS begins investigation
AN organ transplant recipient contracted a rare disease after the operation was authorised despite the teenage donor’s cause of death being a mystery.
The NHS has now launched an investigation into the circumstances leading up to 16-year-old Rohan Godhania’s transplant.
His parents, Pushpa and Hitendra, were left devastated in August 2020 when their outwardly healthy son died in West Middlesex Hospital following what might have been an allergic reaction to a protein shake.
They say they felt “emotive pressure” placed on them to grant use of his organs in the immediate aftermath of his death, but that doing so frustrated efforts to establish why he died, as well as putting the recipient at risk.
Their first insight into the disease that killed their son – ornithine transcarbamylase (OTC) deficiency, a genetic disorder affecting the urea cycle – only came months later when the organ recipient was rushed to hospital with similar symptoms of seizures.
The patient survived, possibly thanks to a crucial test which detects ammonia build-up in the blood, which was not ordered in Rohan’s case.
Even then, it appears the connection was discovered by chance, with an independent expert, who happened to have heard of both cases, putting two and two together.
The family are now demanding to know why Rohan’s organs, including his liver, pancreas and kidneys, were deemed appropriate for use in transplants given the unusual manner of his sudden deterioration and death.
It comes amid a week of turmoil for NHS Blood and Transplant, the authority that oversees organ transplantation in England, with its chief executive stepping down following bullying and harassment allegations made against members of the senior leadership.
A highly critical report by the Care Quality Commission, the official watchdog, is expected in the coming days.
Mr and Mrs Godhania say they had no idea of the severity of their son’s condition until more than 24 hours after he was admitted to hospital, when they were informed that he had suffered significant brain swelling and would die.
It has since emerged that Rohan, a gifted mathematician and chess player, had not been seen by a neurologist because it was August and they were all on leave. His doctors discussed transferring him to Charing Cross Hospital, which had neurologists present, but it never went ahead, apparently because of uncertainty about the protocol for transferring a patient of his age.
The family believe an ammonia test was suggested by one of the doctors at Charing Cross, but that this message did not reach Rohan’s treatment team.
Mrs Godhania, 56, an IT expert, said: “At no point did they give the impression there was anything to worry about. We were totally oblivious.” She described feeling pressured to consent for organs to be retrieved even as the horror of losing Rohan was sinking in.
“It was quite emotive,” she said. “The exact phrase used was, ‘Wouldn’t it be great if your child’s heart continued to beat inside somebody else?’ And we’d just been given this news that he’d passed.”
The couple feel “betrayed” that the transplant system potentially removed the chance to find out why Rohan died, and have both now opted out.
Chelsea and Westminster Hospital NHS Foundation Trust, of which West Middlesex is a part, declined to answer questions regarding Rohan’s care. Derek Manas, medical director of organ and tissue donation at NHS Blood and Transplant, said: “As part of the organ donation pathway, all medical information was shared with the Senior Coroner and permission was sought and granted by them for organ donation to proceed.”
North West London Integrated Care System has also commissioned an independent investigation of the case.
‘It was quite emotive. And we’d just been given the news that he’d passed. It makes you feel desperate for his heart to continue’