Family feels betrayed after donating 16-year-old's organs

For the family of Rohan Godhania, 16, keen pianist and chess player, 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 boy could not be saved after suffering severe brain swelling. He 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.
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.
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.
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.
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.
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.
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.