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Children's Liver Disease - Are You Yellow Alert?

Many babies are jaundiced to some degree but did you know that if it goes on for more than two weeks after birth it may be the sign of liver disease?

Children's Liver Disease Foundation (CLDF) is dedicated to fighting all childhood liver diseases. The charity's Yellow Alert Campaign is all about raising awareness, amongst parents and health professionals, of the symptoms of liver disease in newborn babies. If your baby has been jaundiced for more than two weeks or three weeks for a premature baby, ask your GP or health visitor to refer you for a split bilirubin blood test which will indicate whether the jaundice is caused by liver disease.

Liver Disease

It is vital that liver disease is identified and treated as early as possible. One mum who is all too familiar with the importance of Yellow Alert is Emma Edwards from Reading. Emma's son Oliver is now a lively six year old, who enjoys school and playing with his two sisters. As a newborn baby however, the story was a very different one. Within days of bringing him home from hospital, Emma and her husband, Alastair, instinctively knew that something was wrong.

'Oliver was an odd yellow colour, he would feed frantically but never seem satisfied, his nappies were a strange colour and smelled terrible – I had a strong sense that things were not as they should be and raised my concerns with doctors and health visitors but I was told not to worry,' explains Emma. 'In fact it was not until Oliver was five weeks old that I finally got the health professionals to
Healthy Oliver
react. My health visitor did a urine test which showed signs of bilirubin. She arranged an immediate hospital appointment and two days later we were told he had the rare and life threatening disease, biliary atresia – something we had never heard of before. We were devastated - we felt lost and helpless.

'The next two years were tough. Oliver immediately underwent an operation called a Kasai which, if successful, means that a child with biliary atresia can go on to lead a normal healthy life. Unfortunately Oliver failed to thrive after his. He still didn't put on weight and had to be fed with a naso gastric tube; he still produced a huge number of dirty nappies and his regular bouts of illness meant frequent stays in hospital.

Liver Transplant

'Finally, at the age of just two and a half, Oliver was put on the transplant list and we were incredibly lucky that we only had to wait six months for a suitable donor organ to be found.

'We now think of life in terms of before and after transplant. Three years on from the operation, Oliver's life has been transformed and ours along with his. It has been amazing to see him gradually regain his strength and his appetite as well as discover for the first time abilities that he had never had before. Even his medicines have become more manageable.

'My experience of Oliver's first three years means that I am passionate about raising awareness of liver disease which is why I support the Yellow Alert campaign. CLDF were on hand with the information we needed when Oliver was diagnosed and have been there for us ever since. Had I known about biliary atresia, I would have insisted upon the diagnostic blood test much earlier. Who knows - Oliver's Kasai operation might have been successful if it had been performed earlier? We shall never know but I do know that, despite the challenges that Oliver still faces, we are one of the lucky ones.

'If my story means that one baby with prolonged jaundice is diagnosed early and spared what we went through, I'll be delighted. Please ,please spread the word and be yellow alert.'

May 2011

To find out more, visit www.yellowalert.org. For further details on Children's Liver Disease Foundation visit www.childliverdisease.org or call 0121 212 3839.
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