Little Billy Twitchen is the picture of joy as he plays happily with his toys and runs around with his school friends.
It has been a long journey for the brave youngster, who has survived life-threatening liver disease, an organ transplant and cancer caused by his medication – all by age three.
Terrified parents Laura and Alec feared they would never get to see their son reach normal milestones, such as celebrating birthdays or going to school.
Yet the mini medical marvel has defied the odds, astounding even his doctors.
And now, aged five and in reception class at infant school, train-mad Billy is full of life.
Mum Laura, 40, says: “Billy is an amazing fighter. He’s like a cat with nine lives.
“It really looked as if we might lose him before the transplant and after he got the cancer.
“He has spent half of his life in hospital and we never thought we would see the day that our boy would start school. He is amazing.”
Billy was 18 days old when his skin turned yellow.
Doctors at Southampton Children’s Hospital diagnosed the life-threatening liver condition biliary atresia, in which bile ducts are blocked due to scarring. This causes bile to build up and damage the liver.
The tiny infant had emergency surgery at King’s College Hospital in London to remove the blocked bile ducts – an operation called a Kasai procedure.
But Billy continued to decline, and a massive build-up of fluid in his tummy started to affect his breathing.
He picked up for a while, but ended up back in hospital with an infection. Then, in intensive care, he stopped breathing.
Laura and Alec were scared their baby boy – who had gone through so much in nine months of life – wasn’t going to make it.
Laura, a children’s social worker, says: “That was the first time we thought we were going to lose him. My heart was in my mouth as we rushed to his bedside.”
Doctors “bagged” him to squeeze vital air into his shut-down lungs, and Billy pulled through, but it was clear an urgent liver transplant was needed. Many infants with his condition do not live past the age of two without an op. Billy was pushed up the list.
He had the transplant in London in summer 2018, aged 10 months. As he recuperated at home, Laura and Alec, 42, thought their son’s ordeal was finally over. But they were in for another blow.
In early 2019, Billy was rushed to hospital with another bile duct blockage, threatening his life.
He again needed an urgent operation and had to endure yet more bile duct repair surgery the following year.
For a while he seemed to be doing well. But in May 2020 Billy was back with doctors again after his body began to rapidly swell.
The diagnosis was devastating: the anti-rejection drugs designed to preserve Billy’s precious new liver had actually triggered cancer. Billy, then two-and-a-half, was diagnosed with stage 3 post-transplant lymphoproliferative disorder – cancer in his lymph nodes.
Alec, a sailmaker, says: “There had been some mention of cancer at the time of the transplant and it’s in the paperwork you sign.
“But there’s so much going on when your kid is having a life-saving transplant that you put it to the back of your mind.”
They faced an appalling decision. Treatment involved taking Billy off his immunosuppressant drugs, increasing the risk his body would reject his new liver.
But if they didn’t tackle the cancer, it would kill him.
He endured four rounds of gruelling chemotherapy – two while he was in a medically induced coma – and, thankfully, his system did not reject his liver.
With the cancer in remission, the lad returned home to Netley Abbey, near Southampton, in August 2020 to start long-term rehabilitation. His progress has thrilled his medical team. Consultant gastroenterologist Dr Tracy Coelho says: “There were many times during Billy’s early years when I honestly thought he wouldn’t make it.
“He has been such a fighter through all of this and I am incredibly proud of him and his family for their resilience and strength.”
In the past 12 months Billy has finally been able to really enjoy his life – including passing a milestone by starting at Stoke Park infant school in Eastleigh, Hants.
His mum says: “The illnesses have held him back so much but now he is beginning to catch up at school with the help of speech and language therapists.”
Like many five-year-olds, Billy is crazy about trains and Thomas the Tank Engine – and loves watching YouTube videos of Fred Dibnah’s famous steam engine. He even took his electric train set to hospital.
Laura says: “When the doctors and nurses came to see him they were down on the floor playing with his trains. The physiotherapist even used the train set as part of his physio to strengthen his arms.”
Starting school means Billy is finally able to mix with children his age. His mum adds: “During more than a year of lockdown Thomas was Billy’s best friend.
“Now he’s learning to make friends at school.”
Because of everything he has been through, Billy hasn’t yet learned to speak at the rate of other children in his year group.
But Alec says: “He’s doing really well now though and talking much more. We’re so proud of him.”
His recovery continues to amaze his mum and dad, his tireless team of medics, and his teachers.
Learning support assistant Penny Earl adds: “Billy is an absolute joy. He is so full of life.
“He amazes me. He throws himself into everything.”
For more information, visit organdonation.nhs.uk
