A nine-year-old girl with a rare form of liver cancer has undergone a life-saving transplant in Saudi Arabia after the NHS refused to operate and her aunt travelled more than 4,000 miles to be a donor.
Phoebe Clarke, from Altrincham, Greater Manchester, was diagnosed with hepatic angiosarcoma in February last year. Doctors told her parents, Matt Clarke and Lindsey Billington, that a full liver replacement was her only chance of long-term survival. However, the NHS declined to perform the operation, citing a high risk of the cancer returning.
Undeterred, the family launched a crowdfunding campaign that raised nearly £200,000. Phoebe's aunt, Sarah Billington, proved to be a matching donor, and the family travelled to the King Faisal Specialist Hospital and Research Centre in Riyadh, Saudi Arabia.
Successful surgery and recovery
The transplant involved removing a portion of Sarah's healthy liver and transplanting it into Phoebe. Because the liver regenerates, Sarah's liver is expected to return to normal size within a few months.
Lindsey Billington told the Manchester Evening News: "It was a success. Phoebe's in a bit of pain but both the liver team and the Paediatric Intensive Care Unit doctors are happy with her. She is off ventilation and has been asking for water and getting feisty because she is not allowed it."
She added: "They advised us that she'd be ventilated and sedated for at least a day, maybe two, so she's doing amazingly well. She punched us both in frustration."
Of her sister's role as donor, she said: "Sarah as the donor has gone all Donald Trump on me and said the doctor's said it's the best liver they'd ever seen."
Support from celebrities
Phoebe, who has a twin brother Eric, is a Manchester City fan. Her favourite player, Erling Haaland, sent a video message: "Hi Phoebe, Erling Haaland here. Stay strong, keep going, all the best." Former boxing champion Frank Bruno also offered support.
NHS decision defended
Three NHS centres in Leeds, London, and Birmingham considered the case but all agreed a transplant was not appropriate. Dr Magnus Harrison, Chief Medical Officer at Leeds Teaching Hospitals NHS Trust, said: "I am deeply sorry for the distress that this decision has caused to Phoebe's family. It is a truly awful situation for any family to be in, and my thoughts are with Phoebe and her family at this difficult time."
He added: "The decision not to offer Phoebe a liver transplant was incredibly difficult and was made following an extensive clinical review in consultation with the other specialist centres in Birmingham and London. Unfortunately, all organisations agreed that a liver transplant would not be an appropriate treatment for Phoebe. A decision supported by NHS Blood and Transplant."
Despite the setback, the family expressed gratitude to donors who made the Saudi treatment possible. Lindsey posted on social media: "Thank you to everyone who's donated so far it means the world. Because of your generosity we've just arrived in Riyadh, Saudi Arabia. The world leading experts in live liver transplants are based here. Because of all you amazing people we've been given this opportunity, we couldn't have done it without every single one of you."
