“It was quite emotional. The exact phrase they used was “wouldn’t it be great if your child’s heart kept beating inside someone else.” And they had just given us the news that had happened. It makes you feel desperate for his heart to go on.”
The couple say they feel “betrayed” because the organ transplant system potentially removed the chance to find out why their son died, and now they have both chosen not to.
It was only after the Royal Free hospital receiver’s treatment team contacted Rohan’s pathologist that the official cause of death was updated to record over the counter deficiency.
The average waiting time for a transplant in the UK is several years, and public confidence in the system is vital to maintaining the flow of donor organs.
Chelsea and Westminster Hospital NHS Foundation Trust, of which West Middlesex is a part, declined to answer questions about 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 an investigation thorough investigation into this case and have met with the family to discuss the findings.
“The team at the hospital caring for Rohan carried out many tests and investigations but unfortunately Rohan was confirmed to be brain dead.
“As part of the organ donation pathway, all medical information was shared with the senior coroner and permission for organ donation was sought and granted.
North West London Integrated Care System has also commissioned an independent investigation into the case
A broken family desperate for answers
Rohan Godhania was a shy, smiling teenager who had just come 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 piano.
His father, Hitendra, smilingly remembered him as a “typically nerdy teenager,” but added, “He was starting to talk a little more that summer.
“I was very happy. I thought: “You will achieve a lot, you will easily surpass what we did [his parents] to have done”.
Under the loving guidance of older sister Alisha, Rohan was beginning to show an interest in pop music and had booked his first concert tickets with her to see artists HAIM and Bon Iver.
But all those hopes and dreams ended at West Middlesex Hospital in August 2020, after Rohan died of brain swelling despite not having been seen even once by a neurologist.
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