UK hospital declines liver transplant for child with rare, aggressive hepatic angiosarcoma, prompting family appeal abroad

Phoebe Billingham, a young girl from Altrincham battling a rare and aggressive liver cancer, faces a UK transplant ban amid concerns over recurrence, leading her family to explore treatment options abroad and fuel a debate over current medical guidelines for rare malignancies.

Phoebe Billingham, a spirited young girl from Altrincham, continues to fight a rare and aggressive form of liver cancer called hepatic angiosarcoma. Despite her high energy and previous active lifestyle—including martial arts, swimming, basketball, rugby, and football inspired by Manchester City’s Erling Haaland—Phoebe was diagnosed in February with this devastating illness. The cancer, which infiltrates every remaining part of her liver, has necessitated four rounds of chemotherapy in an effort to shrink her tumours.

Phoebe’s only potential route to long-term survival, according to her oncologists, is a liver transplant. However, the NHS—specifically Leeds Teaching Hospital with expert input from centres in London and Birmingham—has decided against listing her for a transplant. Their clinical review concluded that the risk of cancer recurrence post-transplant is too high, a stance supported by NHS Blood and Transplant. This has left Phoebe’s family seeking treatment options abroad, with possibilities being explored in Paris, the Netherlands, and Boston. The family has also organised a fundraising campaign, having already raised around £80,000 towards the costly procedure, which could exceed £200,000 if done privately in the UK.

Phoebe’s mother, Lindsey, voiced a poignant perspective shared by many parents in similar circumstances: “As a parent, you just want to give your child a chance.” Her father, Matt, echoed this sentiment, emphasising Phoebe’s remarkable determination and vibrant spirit despite her diagnosis. The family had hoped for a live donor liver transplant, with relatives ready to be tested, but all three UK centres considered this approach too risky given the rarity and aggressiveness of the cancer.

The clinical caution is echoed broadly in medical literature. Hepatic angiosarcoma is a rare malignancy characterised by a very poor prognosis, frequently leading to death within months of diagnosis. While surgical resection is considered the mainstay of treatment where feasible, complete removal is challenging because of the diffuse nature of the disease. Liver transplantation has traditionally been contraindicated due to extremely high rates of cancer recurrence and very limited survival post-transplant. Various academic reviews and case studies highlight this risk, noting a lack of long-term survivors among hepatic angiosarcoma liver transplant recipients. Palliative measures and chemotherapy provide limited benefit, and novel therapies are often crucial to controlling symptoms or tumour progression.

However, there are emerging reports suggesting some potential in more experimental approaches. One study documented a child successfully treated with liver transplantation combined with sirolimus therapy, a drug targeting the mTOR pathway, which may have contributed to a positive outcome. Such cases, though, remain exceptionally rare and have not yet changed the general consensus in the UK, where clinical caution prevails due to the lack of sufficient evidence supporting widespread transplant use for these patients.

In addition, there have been reports of hepatic angiosarcoma developing in liver transplant recipients, underscoring the difficulties in managing this disease and the complex biological behaviour that contributes to poor outcomes. This complexity reinforces the delicate balance clinicians must strike between offering potentially curative interventions and avoiding procedures that could cause harm or false hope.

At Leeds Teaching Hospitals NHS Trust, Dr Magnus Harrison expressed sympathy for Phoebe’s family while explaining the difficult decision made by multidisciplinary teams. He acknowledged the family’s desire for further opinions abroad and reiterated the ongoing support for Phoebe’s care.

Phoebe’s family remains resolute, unwilling to give up as they seek opportunities beyond UK borders. Their story poignantly highlights the agonising decisions faced by patients and families confronting rare cancers where conventional treatments offer limited hope. It also draws attention to the need for continued research and innovation in treating hepatic angiosarcoma and similar malignancies, alongside compassionate consideration of patient and family hopes in care planning.

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Source: Noah Wire Services

Noah Fact Check Pro

The draft above was created using the information available at the time the story first
emerged. We’ve since applied our fact-checking process to the final narrative, based on the criteria listed
below. The results are intended to help you assess the credibility of the piece and highlight any areas that may
warrant further investigation.

Freshness check

Score:
8

Notes:
The narrative appears to be original, with no prior publications found. The Manchester Evening News is a reputable source, and the article includes recent data, suggesting a high freshness score.

Quotes check

Score:
9

Notes:
The direct quote from Phoebe’s mother, “As a parent, you just want to give your child a chance,” is unique to this report, indicating original content.

Source reliability

Score:
9

Notes:
The narrative originates from the Manchester Evening News, a reputable organisation, lending credibility to the report.

Plausability check

Score:
8

Notes:
The claims about Phoebe Billingham’s diagnosis and treatment align with known medical information on hepatic angiosarcoma. The inclusion of expert opinions and references to medical literature supports the plausibility of the narrative.

Overall assessment

Verdict (FAIL, OPEN, PASS): PASS

Confidence (LOW, MEDIUM, HIGH): HIGH

Summary:
The narrative is original, sourced from a reputable organisation, and presents plausible claims supported by expert opinions and medical literature. No significant issues were identified, indicating a high level of credibility.