Biliary Atresia - Defect in Children

I am a Father who has just found out that my son Prajas (picture on left) who is 2.5 months old is having billiary atreisa. I had so far only heard of AIDS, Cancer etc. as rare diseases and have been caught completely by surprise. This disease cause the bile not to follow from the liver to the intestine thus damaging the liver. Early detection is the key and you need to have a good paed.. I have learnt this from experience, my doc could have cleary diagonsed this early but he choose not to and here we are. My son has gone through the Kasai Surgery on Sep 17, 2008 and still here is no bile flow, surgeon/doc told us about this beforehand . His abdomen has increased to 50 cm yesterday and needed aspiration. We have met up with all transplant experts and they say that the baby should in good health free of infections for a sucessful liver transplant. We are praying to god that is well. Tomorrow Sep 29, 2008 doctor has planned for CT Scan to chk where are the fluid leaking from and if any leakage then a surgery would be done again. Pls share your experience if you have know of this rare disease. In India there is limited information and I would really appreciate inputs here. Ultimately Prajas (picture on left) will need a transplant but we have to get him ready for the same. Yours prayers can work, so please do pray for him..God Bless