After well-wishers pledged almost £200,000, Phoebe Clarke and her family were able to travel to Saudia Arabia for the life-saving operation after the NHS refused due to the chance of her condition returning
A loving aunt travelled more than 4,000 miles to save life of her cancer-hit niece after the NHS delivered a liver transplant knockback.
The parents of Phoebe Clarke, from Altrincham, Greater Manchester, were hit with the news that their daughter had rare hepatic angiosarcoma as she was diagnosed in February last year. Experts told them that the nine-year-old’s only chance of long term survival was a full liver replacement – but worse news was to come.
The NHS refused to perform the operation because the chances of her condition returning were considered too high. But an astounding crowdfunding campaign brought in almost £200,000 – and with her aunt Sarah Billington agreeing to be a donor, the family set off for Saudia Arabia.
Her parents Matt Clarke and Lindsey Billington insisted their child “she deserves a chance however slim that might be”. Hepatic angiosarcoma is an aggressive cancer that originates in the endothelial cells lining the blood vessels of the liver. It is described as highly invasive, and carries a poor prognosis.
Lindsey told the ManchesterEveningNews: “It was a success. Phoebe’s in a bit of pain but both the liver team and the Peadiatric 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.
“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”. She added: “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.”
Phoebe, who has a twin brother, Eric, has been treated at the King Faisal Specialist Hospital and Research Centre in Riyadh. The transplant saw a portion of Sarah’s healthy liver removed and transplanted into Phoebe – because the liver regenerates the donor’s liver will grow back to normal size in a few months.
In a video message, Erling Haaland, who is Manchester City fan Phoebe’s favourite player, said: “Hi Phoebe, Erling Haaland here. Stay strong, keep going, all the best.” The family has also received a message of support from former boxing champion, Frank Bruno.
Oncologists advocated a liver transplant. But none of the three NHS centres which could potentially do a live donor operation in Leeds, Kings London, and Birmingham, thought it would be appropriate.
In a message posted on social media Lindsey said: “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.”
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.
“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.”
