Boy, 5, starts school after overcoming liver transplant and beating cancer

Billy pictured on his first day of school. Credit: University Hospital Southampton NHS Foundation Trust

A five-year-old boy has defied the odds and started school after overcoming a liver transplant and beating cancer, all before the age of three.

Billy Twitchen from Netley Abbey near Southampton, has astounded both his family and medics who had feared on many occasions he wouldn’t survive.

Billy was just 18 days old when his parents became concerned about a change of colour in his skin – a sign of jaundice. He was admitted to Southampton Children’s Hospital and, after two days of assessments, was diagnosed with Biliary Atresia – a congenital condition which causes a blockage in the ducts (tubes) that carry bile from the liver to the gallbladder.

At one month old Billy underwent an operation to replace the blocked bile duct with a segment of his own small intestine, known as a Kasai Procedure.

His parents, Laura and Alec, were warned that although the hope was to prevent the need for a transplant, a high percentage of patients who undergo the procedure still require one.

Laura said: “Following the operation Billy was closely monitored but, unfortunately, he remained jaundiced which was a clear sign that the operation wasn’t a success and his liver function was quickly declining.

“This was also causing massive fluid collection in his stomach which led to severe breathing difficulties, so it had to be drained frequently.”

Billy being treated at Southampton Children's Hospital Credit: University Hospital Southampton NHS Foundation Trust

Despite returning home for a few weeks, Billy became unwell again with a sickness bug in December 2017. He was admitted to the Paediatric Intensive Care Unit (PICU) at Southampton Children’s Hospital. He was then registered on the national transplant list after an extended stay in hospital in 2018. In July of that year his parents received the call that no parent ever wants to receive.

Laura added: “We were staying at Ronald McDonald house and the phone rang late at night – my heart stopped as that could mean only one thing.

“We were told to get to the ward as quickly as possible as Billy had stopped breathing – I remember a horrible feeling of ‘it’s the end’ running through me.”

Luckily doctors managed to revive Billy and he was transferred back to hospital in London where he underwent a liver transplant four weeks later. The operation was a success and Billy returned home after two weeks where he started six months of isolation and recovery. Despite suffering from a few infections his new liver seemed to be working well.

However, in February 2019, he was rushed back to Southampton Children’s Hospital where tests discovered that Billy had a blockage and required a further operation to reconstruct his bile ducts.

Billy's parents say they're proud of Billy's resilience and strength. Credit: University Hospital Southampton NHS Foundation Trust

The family found themselves back to hospital in May 2020 after Billy’s body started to swell rapidly and was suffering what was thought to be an anaphylactic shock. Laura and Alec’s fears that their nightmare journey wasn’t over were confirmed – Billy was diagnosed with Stage 3 Post-transplant Lymphoproliferative Disorder (PTLD) cancer.

This type of cancer can develop when transplant patients who are taking immunosuppressive drugs to prevent the rejection of the transplanted organ are more susceptible to certain viruses.

 One of Billy’s clinicians, Dr Tracy Coelho, consultant gastroenterologist at Southampton Children’s Hospital, said: “When a transplant patient is diagnosed with PTLD, the goal is to cure the cancer while also trying to protect the transplanted organ.

“In Billy’s case, if left untreated, the cancer would most definitely have killed him. So, the decision had to be made to withdraw his immunosuppression drugs, which were protecting his liver from rejection, and treat the cancer.”

Billy endured four rounds of gruelling chemotherapy treatment, two when he was still in a medically induced coma and then two more while a patient on the oncology ward.

Billy returned home in August 2020 with his cancer in remission, but he still had a long period of recovery ahead and was referred to SCH therapy services to start a long-term rehabilitation programme.

Billy with mum Laura and dad Alec Credit: University Hospital Southampton NHS Foundation Trust

Dr Coelho continued: “The worry when you withdraw the immunosuppressive drugs too soon from a transplant patient is that the body will start to reject the organ.

"Luckily for Billy his liver held on and he continued to thrive.”

Dad Alec, said: “Billy has been through a lot and because of this he hasn’t hit all of his milestones, including learning to speak at the rate of other children his age.

"But he’s doing really well now though and talking much more.

"We’re so proud of him.”