One Mum's Story: Belinda & Dylan

My purpose in sharing our son's story is that we often hear from people that GPs and other health workers simply haven't heard of this illness and it's imperative that the baby receive treatment within the first weeks of life, to avoid a liver transplant for as long as possible. Although Dylan seems to be stable now, it's been a long road these last 15 months.

Our son, Dylan, was born with a high jaundice level, but it was brushed off and three independent GPs told us not to worry about it - even at the two month immunisations when he was nine weeks old. At 10 weeks of age, our minister told us that based on his past work in paediatrics he thought Dylan's skin and eye colour had changed and we should investigate further. Not worrying too much I took him a few days later for a painful heal prick test (which I was dreading because blood tests are really traumatic for the mums as well) and was shocked to receive a call the very next day saying that we had to "get the baby to a hospital immediately".

At 11 weeks of age a blood test revealed that his biliruben was dangerously high. He was admitted to Randwick Children's Hospital for tests and a week later they had diagnosed the biliary atresia, meaning that his bile ducts were fused together and therefore the bile couldn't leave the liver. Bile lakes had built up inside the liver which become stagnant, toxic and difficult to drain. As the bile wasn't flowing out of the liver, the gall bladder was not performing it's function of releasing bile to help with digestion, therefore it became shrivelled and useless. The last resort was a life saving operation to remove the fused bile ducts and gall bladder and cut the small intestine and fuse it directly onto the liver. This procedure created a two way flow for the bile and he is on constant medication to ensure that the bacteria from the intestine doesn't flow up into the liver creating a bacterial infection. If it does, lengthy hospitalisation for weeks on end may be required to heal any infection.

He was initially admitted at Randwick for 5 weeks in July/July 2007 from the ages of 2.5-4 months of age. Then again for 2 weeks in October. At this point Randwick had done all they could for him and he was sent to Westmead children's hospital where the liver transplant team have him under constant surveillance. He has blood tests every week or fortnight, depending on the last liver function results, his weight gain and energy levels. The first sign of disinterest in food, fever/temperature over 38 degrees or vomiting, results in us dashing to the hospital for blood tests and possible week to month long stays.

So far he has been admitted in hospitals for about 3 months of his short life (1 week in Nov 07, 1 week in January 08, 4 weeks from mid Feb to mid March 08), not including the weekly/fortnightly trips for parent groups, blood tests and check ups with the specialists. Our last stay was in March, just before his first birthday as he had an infection, fever and huge weight loss. Luckily we have seen a huge improvement over the last four months and his weight is now at 9.5kg which is still low for a 15 month old, but his appetite is increasing weekly!

We hope that our story can help save parents the trauma of late diagnosis.

* You may have seen articles in the media about two little girls, Kyla and Cordelia, who are also under the Liver Team care at Westmead - see more information here:
http://www.news.com.au/story/0,23599,23235461-36398,00.html

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