But the need for organ donors is as great as ever.
This week (Thursday 23rd January) marks an important anniversary in the treatment of childhood liver disease as it is 30 years since the first paediatric liver transplant in a child in the UK. The operation on two year old Ben Hardwick by Professor Roy Calne at Addenbrooke’s Hospital in Cambridge attracted national attention following a campaign by the BBC’s That’s Life programme which drew attention to the lack of donor livers available for children.
Although Ben sadly died following his second transplant, over 2,300 children since then have been successfully transplanted. “We now have the first generation of children born with liver disease who have survived into adulthood and it is a wonderful thing to see,” said Alison Taylor, Chief Executive of Children’s Liver Disease Foundation (CLDF), the Birmingham based UK charity which takes action against childhood liver disease. “It’s truly been an amazing journey, watching that progression. Over the past 30 years CLDF has funded a variety of research projects to improve our knowledge of paediatric liver disease and has developed a wide range of support for those families and young people who are affected – (see below for details) support which simply didn’t exist 30 years’ ago.”
A new generation
Sir Roy Calne, who undertook the first operation 30 years ago, is pleased to see that liver transplant has now become an established treatment for childhood liver disease: “I am more than pleased to celebrate the flourishing of liver transplantation for children”, he said. “What started 30 years ago as an exceedingly risky and difficult exercise has now become routine and particularly satisfying are the number of patients who have survived for a really long time after a liver transplant with excellent quality of life. The contribution of Esther Rantzen in creating awareness of the need for organ donation was pivotal in starting the programme. I would like to salute and thank all the long-term survivors and also their families and the families of donors and patients who did not do well but nevertheless paved the way for progress in this new form of life-saving surgical treatment.”
And Esther Rantzen, presenter of That’s Life which did so much to raise awareness of the plight of children with liver disease, is delighted with the legacy of the campaign, She said, “Thirty years ago we told Ben Hardwick’s story on our programme, and eighteen million viewers were thrilled when he received the first liver transplant performed on a child in Britain, and we all wept when a year later Ben tragically died. But Ben’s memory lives on, in the fantastic effect his story had on the history of paediatric liver transplantation. I also vividly remember Matthew Whittaker, whose transplant took place so soon after little Ben’s, and I am thrilled that he has done so well. I will never forget my meetings with Professor Sir Roy Calne, and his skill and dedication. This was one of That’s Life’s most important campaigns, for until Ben’s mother Debbie Hardwick rang our programme, no-one was aware how crucial the donation of a gift of life could be. And of course the need for organs is as urgent now as it ever was.”
Transplant stories
One of Britain’s longest surviving childhood liver transplant patients is 41 year old Matthew Whittaker from Preston. Born with the rare liver disease, biliary atresia, his life saving transplant took place in March 1984 when he was just 11.
“I really didn’t appreciate how poorly I was or that my operation was still at the pioneering stages so I don’t remember worrying about it,” says Matthew. “What I do remember is feeling better afterwards and being able to wear normal clothes and run around because my stomach had shrunk back to a normal size. The only time I or my parents met any other child with a liver disease was in hospital. That didn’t bother me but I know my parents would have found it helpful to speak to other parents in the same situation about what to expect. These days people are surprised when I tell them I’ve had a liver transplant. I’m a teacher and I enjoy competitive running but I know I’m lucky in that I don’t really have to think about it or talk about it.”
Thirteen year old Luke from Reading was also born with biliary atresia but unlike Matthew had always known that a liver transplant was a real possibility one day: “I always tried to get on with things and not think about it” says Luke. “So when I was 11 and the doctors said it had to happen soon because my liver was deteriorating it was a bit of a shock. After the transplant in November 2012 my energy levels shot up and I felt great. I have managed to do loads of stuff that I had never tried before because of my condition. CLDF’s Closer to the Edge programme provided me with the chance of meeting other kids in a similar situation. Everyone else there had a liver disease and it was great not being the only kid taking medication every day!”
For four year old Sophie, a liver transplant this summer meant she could start school this year and finally join in everything with her twin siste.: Her family, who had been put in contact with CLDF following Sophie’s diagnosis with biliary atresia as a baby, felt prepared for the transplant process: “We have access to so many ways of making contact with other parents who we have met through CLDF and as the transplant assessment was approaching we did speak to others who had been there before us,” says Sophie’s mum Louise. “This really helped as these were REAL people and we think this was a major factor in us being confident in voicing our views to Sophie’s medical team.
“Sophie is currently well, thriving and happy, but we know this may not always be the case, so if the earth shifts beneath our feet again and we need to steady ourselves we know who to turn to…..CLDF!”
Continuing support
For CLDF, the support of children and young people affected by liver disease remains paramount. “Thirty years ago, the prognosis for a child born with liver disease was very poor indeed, medical knowledge was patchy even amongst health professionals and parents had nowhere to turn for information” says Alison Taylor.
“Today, thanks to the dedication of health professionals, the outcomes from research, and the success of the transplant programme, survival rates have significantly improved and families in that situation have access to information and emotional support which was just not available 30 years ago. It is wonderful to see that, of the young people supported by CLDF, there are now over 1800 over the age of 18 living with a liver condition (with or without a transplant) which is why we are now extending our services to support adults whose liver disease was diagnosed in childhood, as well as children.
“Although the transplant programme has saved so many lives there is still a shortage of donor livers for children. As we speak there are 28 children in the UK urgently awaiting a new liver. We would urge everyone who can to consider transforming a life by joining the organ donor register and telling their friends and family of their wishes.”