The NHS is investigating after a rare disease was passed on via an organ transplant that was signed off despite the donor’s cause of death being a mystery.
Pushpa and Hitendra Godhania were left devastated in August 2020 when their outwardly healthy 16-year-old son Rohan 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 after the recipient was rushed to hospital with similar symptoms of seizures.
The patient survived, potentially thanks to a crucial test that detects ammonia build-up in the blood, which was not ordered in Rohan’s case.
Even then, it appears that 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 demanding to know why their son’s organs were deemed appropriate to retrieve 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.
Despite Rohan having been admitted more than 24 hours previously, Mr and Mrs Godhania had no idea of the severity of their son’s condition until they were informed that he had suffered significant brain swelling and would die.
It has since emerged that the 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 a team of neurologists present, but this never went ahead due to apparent uncertainty about the protocol for transferring a patient of his age.
The family believe that an ammonia test was suggested by one of the doctors at Charing Cross, but that this message did not reach Rohan’s treatment team.
The parents said in a statement: “We were huge fans of the NHS, and we put 100 per cent trust in them when we handed over our son to their care and effectively stood aside.
Mrs Godhania, 56, an IT expert, added: “At no point did they give the impression that there was anything to worry about. We were totally oblivious.”
She described feeling pressured to consent to her son’s organs to be retrieved even as the horror of losing their son was sinking in.
“It was quite emotive. The exact phrase they 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. It makes you feel desperate for his heart to continue.”
The couple say they feel “betrayed” that the organ transplant system potentially removed the chance to find out why their son died, and they have both now opted out.
It was only after the recipient’s treatment team at the Royal Free hospital was put in touch with Rohan’s pathologist that he updated the official cause of death to record OTC deficiency.
The average waiting time for a transplant in the UK is several years, and public confidence in the system is vital to maintain the flow of donor organs.
Sarah Kingsley Fried, from Fieldfisher solicitors, is helping the family investigate what happened. "Understandably, they are devastated by Rohan's death and need clearer answers."
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: “We have been working closely with all parties involved in this case since this diagnosis came to light. We have carried out a thorough investigation into this case and met with the family to discuss findings.
“The hospital team caring for Rohan carried out many tests and investigations, but sadly Rohan was confirmed brain stem dead.
“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
A family ripped apart and desperate for answers
Rohan Godhania was a shy, smiley teenager who was just coming out of his shell when he died suddenly two years ago.
A gifted mathematician and physicist, the 16-year-old brought the same “effortless” talent to chess and the piano.
His father, Hitendra, recalled him smilingly as a “typically nerdy teenager”, but added: “That summer he was beginning to speak up a bit more.
“I was so pleased. I thought “you’re going to achieve so much - you’re easily going to outstrip what we [his parents] have done”.
Under the loving guidance of big sister, Alisha, Rohan was beginning to show an interest in pop music and had booked tickets to his first concerts with her to see the artists HAIM and Bon Iver.
But all those hopes and dreams ended at West Middlesex Hospital in August 2020, after Rohan died from brain swelling despite not once being seen by a neurologist.
The dining room table of the family home in Ealing, west London, is now scattered with his photos.
They lie alongside lever-arch files of documents compiled by his devastated parents as they fight what they see as an impenetrable NHS establishment to find out what happened.
“It feels unreal,” says Pushpa, 56, his mother. “I still expect him to come through the front door at 5pm after school, that if I should upstairs he’ll come down from his bedroom, that he would be out there enjoying this weather.”
“We were a happy family of four,” she continued. “We had basic holidays. We played scrabble.
“It made us happy. We were a close family and Rohan was at the centre of it, the baby of the family. Everyone doted on him.
“Without him, we are different people. We don’t play any games. There isn’t that joy. His sister has unexpectedly become an only child.”