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2006 July 27 - Canterbury teen celebrates 15th annivesary of life saving liver transplant

August will be a very special month for Canterbury teenager Gwilym Maltby as he reaches the fifteenth anniversary of his life saving liver transplant.  

Parents Richard and Jane Maltby who live on Queens Avenue were delighted when their forth child, Gwilym, was born in January 1991.  However their delight turned to horror in the weeks that followed when a health visitor noticed that Gwilym was jaundiced and referred him for tests.

When he was still just six weeks old, Jane and Richard were given the devastating news that Gwilym had been diagnosed with biliary atresia, a disease in which the bile ducts become progressively blocked leading to irreversible liver damage. 

Shortly afterwards Gwilym underwent a corrective operation called a “kasai” at Kings College Hospital in London.  Unfortunately after the operation Gwilym suffered repeated bouts of cholangitis, an infection of the biliary tract, and the family were told that Gwilym’s only hope was now a liver transplant.

Mum Jane says, “When Gwilym was diagnosed with biliary atresia we were horrified.  So few people had even heard of the disease and we felt very alone.  We couldn’t understand why a blocked duct couldn’t just be unblocked.  It was awful to stand by as our baby boy underwent the kasai operation.  Then our world was then turned upside down again when we were told that after all he’d already been through he would need a transplant to survive.”

Gwilym was put on the transplant list for the desperate wait for a donor organ. To the family’s great relief they received the call they’d been praying for in August 1991 - a donor organ had become available. Gwilym underwent his first transplant operation at Addenbrooke’s Hospital, Cambridge on 9th August – his brother Fred’s fifth birthday.

In the days that followed tests showed that there was a blockage in the hepatic artery causing thombosis and specialists at the hospital told Jane and Richard that a second transplant was needed.

It was now a race against the clock to find another organ.  Thankfully a donor liver became available in time and seven month old Gwilym underwent a second operation just eight days later on 17th August. This time the transplant was a success and Gwilym went on to make a good recovery.

Jane adds, “We are aware that Gwilym will never be totally out of the woods and he needs to take medication every day to help him from rejecting his new liver. However the affects of the transplant have been amazing.  Gwilym is like any boy his age, he is happy and active and he is now 5’11” tall so his illness definitely hasn’t affected his growth!  He is very sociable and has a fantastic sense of humour.”

Gwilym takes part in all aspects of the curriculum at The King’s School, Canterbury where Richard teaches history and politics, and is hoping to do well in his G.C.S.E’s next year.  He is also the schools football manager and enjoys gardening and cooking.

Over recent years the family have been keen to raise awareness of childhood liver disease and the work Children’s Liver Disease Foundation (CLDF), the charity which offered vital emotional and practical support when Gwilym was diagnosed.   

Richard, who has been a trustee of the charity for ten years says, “August is always a special month and each year we place flowers at our local chapel in memory of the donors.  The fifteenth anniversary of Gwilym’s transplant will be a particularly special occasion for the family and we hope to use this fantastic milestone to help raise awareness of childhood liver disease and the work of the Foundation. There are thousands of families affected, yet few people are even aware that children can get liver disease.  In fact two children are diagnosed with a liver disease every day in the UK. CLDF’s services are vitally important to these families and they were a life-line for us at a time when we felt very alone.”

Catherine Arkley, chief executive of Children’s Liver Disease Foundation, says, "We are delighted that Gwilym is doing so well fifteen years on from his transplant.  Gwilym’s story highlights how transplants can transform lives but there is a desperate lack of donor organs.   We urge the public to think about registering on the UK organ donor register (www.uktransplant.org) and talk to their relatives to make their wishes known.  Parents like Richard and Jane still do not why or how Gwilym had a liver disease which is why, in addition to our family support and education programmes, our research programmes are so important.  However, research is hugely expensive, so we really need public support.”

For further information on the work of the Foundation, please visit www.childliverdisease.org or call 0121 212 3839.

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For further information on this story please contact Rachel Markham, Children’s Liver Disease Foundation, tel: 0121 212 6012, e-mail: communications@childliverdisease.org

Note to editors:
The Children’s Liver Disease Foundation is a unique national charity that fights childhood liver diseases through funding pioneering research and educating healthcare professionals and the general public. Formed in 1980, it provides professional, emotional support to families affected and is the only organisation of its kind in the UK.

Childhood liver disease – the facts
• More children in the UK are currently diagnosed with a liver disease than childhood leukaemia
• At least two children are diagnosed with a liver disease every day in the UK
• Most childhood liver diseases are life threatening; all mean a lifetime of care
• There are over 100 different liver diseases that can affect babies, children or young people
• For most childhood liver diseases the cause is unknown
• Liver disease has no cure
• CLDF is the only organisation in the UK dedicated to stamping out childhood liver disease