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For the family of Rohan Godhania, the morning of August 15, 2020, was no different to any other weekend. The talented 16-year-old schoolboy had spent the day enjoying his summer holidays at his home in Ealing, West London, before he began to vomit later that evening, with his parents suspecting an allergic reaction to a protein shake.

Just 48 hours later, his family were given the devastating news that the talented 16-year-old could not be saved after suffering severe brain swelling. The keen pianist and chess player had “gradually deteriorated” over the course of two days, and he passed away at West Middlesex Hospital at 5.03pm on August 18, after a brain-stem test concluded that he had died.

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His parents, Pushpa and Hitendra Godhania, were then left with the difficult decision to donate his organs immediately after the traumatic experience of losing their son. Despite Rohan’s cause of death being unknown, the family felt “pressure” to grant use of his organs, although it had not been established what had caused his sudden and unexpected passing.

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Their grief was compounded 13 months later after they received a call from NHS Blood and Transplant to inform them that the recipient of his organs had been rushed to hospital with seizures. This was the first time the family had heard of the disease that killed their son, a rare genetic disorder called ornithine transcarbamylase (OTC deficiency) which causes ammonia to build up in the blood.

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Both Rohan and the recipient’s case had been referred to the same independent specialist, who by coincidence had managed to put two and two together. Now the family are demanding to know why their son’s organs were donated given that his sudden deterioration and death had remained unexplained.

Described by his parents as a “very talented young kid”, Rohan had been raised in a close-knit family of four, and shared a close bond with his older sister Alisha. The two had regularly shared memes of frogs to one another as part of a long-standing joke, and Alisha now proudly displays a bespectacled frog tattoo on her upper arm, in memory of her brother. A student at Tiffin School in Kingston, Rohan had enjoyed a passion for sciences and had recently decided to study Maths, Physics and Chemistry for his A-Levels.

Speaking to MyLondon, Pushpa, a 56-year-old IT expert, said: “He liked slapstick kind of movies and visually funny things, he’d see something and he’d just be in fits of giggles. Just the usual kind of young child, he was still into playing all his games on the Nintendo Wii which he enjoyed with his friends, he was into board games. One of the things I used to tell him was that there is no rush to grow up, grow up and be as childish as you want and I really appreciated that.”

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Whilst he had been a shy child, both of his parents had noticed him becoming “more confident” in the months before he tragically died. A keen musician, he was a skilled pianist and played the clarinet in the orchestra at Ealing Junior Music School, whilst aspiring to one day study at university.

He was rushed to hospital after becoming unwell at his home in Ealing on August 16, 2020 © Pushpa Godhania He was rushed to hospital after becoming unwell at his home in Ealing on August 16, 2020

On August 15, the family had enjoyed a Saturday morning at home, with Rohan later making a protein shake in an attempt to build weight. His dad Hitendra said: “He was fine with it and then late afternoon when we were having lunch, he said his tummy ached. He didn’t have anything else to eat and a little later on in the early evening he vomited a few times. Again, there was nothing concerning.”

He quickly researched the ingredients in a protein shake but suspected that Rohan may have been suffering from a usual tummy bug or norovirus. It wasn’t until the following morning on August 16 that concerns were raised after Rohan was unable to find the table in his bedroom.

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Believing him to be dehydrated, he was taken downstairs and given a dioralyte, before his parents decided to call the emergency services. Within minutes a paramedic arrived followed by an ambulance crew, and the decision was made to take him to hospital. During the journey, Rohan became increasingly “agitated” and attempted to get up whilst the vehicle was moving, causing his dad to physically restrain him as they rushed him to West Middlesex Hospital.

Doctors discussed transferring him to Charing Cross Hospital where a team of neurologists were present, but he was eventually admitted to a ward where he gradually deteriorated over the next few hours. “I was unaware that he had deteriorated that much and when I arrived it was quite shocking the state he was in. After I saw the state Rohan was in, I went into the hallway and I screamed at the top of my voice for about two minutes and then I went back in,” Pushpa said.

She tearfully continued: “I can’t remember much of the time apart from when Rohan tried to get up and he fell against my arm and the next thing I knew they wheeled him out. Before they wheeled him out I tried to speak to him. I said to Rohan, ‘please stay still, you’ll get better’ or something like that, and that was it really.”

The schoolboy was admitted to the intensive care unit at midnight on August 17, with the family still completely unaware that there was a possibility he could die. After he was fully sedated, his parents returned home for a few hours rest, only to be called at 5am to say that he had now been intubated on a ventilator.

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Pushpa and Hitendra were later informed that their son had not seen a neurologist during the course of his illness as it was August and they were all on leave. “We were unaware that there was no neurologist there to see him and that they were having issues transferring him, we didn’t know any of that at the time.

“So when he was fully sedated we went home and thought ‘oh he’s safe, we’ll get some sleep, the medication will have a chance to work and we’ll see him first thing in the morning’. We weren’t made aware of the possibility we might lose him or anything like that, nothing at all,” Pushpa said.

After arriving at the hospital on Monday, August 17, they were informed by the consultant that they planned to do another CT scan that afternoon. His parents were then given the devastating news at 6pm that the brain swelling was severe, and neurologists at Charing Cross Hospital had said they were unwilling to operate as it would not be in his best interests.

“He was fine on the Saturday and to be given this news on the Monday was shocking and it’s hard to take in. You’re almost on an auto-pilot and really normal, like you’re watching from the outside - it’s hard to take it in,” his mum said. Rohan’s dad then had the difficult task of breaking the news to his sister, before the family spent a final evening with him, listening to his favourite music and surrounded by his teddy bears.

A brain-stem test was conducted the following day and Rohan was pronounced dead at 5:03pm on August 18. Almost immediately afterwards, the family had to consider donating his organs and to fill in lengthy forms about his medical health. However, the family said they felt “deceived and duped” as the donation of his organs meant that their efforts to determine what had caused Rohan’s death were significantly disrupted.

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In September 2021, whilst they were dropping Alisha off at a placement in Plymouth, they received a call from the NHS Blood and Transplant Team requesting an urgent meeting. They were then informed that the recipient of their son’s organs had become seriously unwell earlier that year and a biopsy on his liver had revealed that Rohan had suffered from OTC.

It was only after the recipient’s treatment team at the Royal Free hospital contacted the same expert involved in Rohan’s case that the two were connected and his official cause of death was recorded as OTC deficiency. His family now say they feel “betrayed” as the process of immediately donating his organs robbed them of their chance to discover what had happened to their son, and put another individual at risk.

Pushpa continued: “The process of donating organs, we feel that it’s not really clear and we aren’t sure if the processes are ethical given that the organs aren’t tested. Rohan doesn’t get a chance and the donor doesn’t get a chance to find out.” The NHS are now investigating why his organs were signed off, with the North West London Integrated Care System commissioning an independent investigation into the case.

In a statement, 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. Patients are confirmed as brain stem dead using neurological criteria by two doctor’s at the hospital where they are being treated and cerebral oedema (brain swelling) is a recognised natural cause of death confirmed using neurological criteria.

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  Living with breast cancer: ‘I spent three years with one breast, waiting for reconstruction’ Alison Monte thought she would not have to wait too long to have breast reconstruction after her mastectomy, but faced a lengthy delay. She tells Paul Gallagher about the stress and anxiety the long wait causedI noticed it in the morning and just thought it was where I had been laying on the sheets in my pyjamas. One day, I think I’d been up for a couple of hours, had a shower, and seen that it hadn’t gone away. So I went to get it checked out.

"All processes were followed and there was no known reason why Rohan would have not been considered for organ donation at the time of death. Our thoughts are with his family. The death of a child is tragic and the fact that they agreed to donate his organs shows their selflessness and bravery at such a distressing time."

A spokesperson for Chelsea and Westminster Hospital NHS Foundation Trust said: "Our thoughts are with the Godhania family who have experienced this loss. We are unable to comment on individual patient cases."

Two years on and both parents do not feel that they have had the proper chance to grieve as there are too many unanswered questions. “You feel you owe it to your child to ask these questions and any parent would do that in our position,” she said. “Some people might think you should be moving on but there’s no moving on if you’ve lost a child. You want to know if they could have been saved and whether there is learning to prevent other families from going through the same thing.”

In a statement, they said: “We believe there were many missed opportunities to save Rohan, and we have so many unanswered questions. After such an unexpected loss, we feel it's important that full circumstances surrounding our son's death are looked at in order to identify possible learning, so that other families do not suffer similar tragic outcomes in the future.

“Sadly, our search for answers has been a struggle and taken up much of our time. We have been unable to grieve properly or contemplate commemorating happy memories of our son.” 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."

The second anniversary of his death will be made the more difficult his family say, as his friends go to collect their A-Level results and make plans for university in September. They and a few other close family friends have organised a vigil in Rohan’s memory outside the West Middlesex Hospital, where they can gather together and remember his life. As his funeral was restricted by Covid-19 regulations, this will be the first time several of them can come together and remember the talented schoolboy.

His parents said: “On August 18, 2022, Rohan should have been celebrating his A level results and looking forward to university, and his future life ahead of him. Instead, it is the second anniversary of his death."

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The Samaritans offer support and advice to people feeling suicidal or vulnerable 24 hours a day, 365 days a year. Their website is https://www.samaritans.org, email address [email protected] or call free on 116 123

Living with breast cancer: ‘I spent three years with one breast, waiting for reconstruction’ .
Alison Monte thought she would not have to wait too long to have breast reconstruction after her mastectomy, but faced a lengthy delay. She tells Paul Gallagher about the stress and anxiety the long wait causedI noticed it in the morning and just thought it was where I had been laying on the sheets in my pyjamas. One day, I think I’d been up for a couple of hours, had a shower, and seen that it hadn’t gone away. So I went to get it checked out.

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