寒心 Research

照顾女儿的这段期间，我很努力地在找着关于BA这个病的资料，也加入了外国的Support Group里看其他BA孩子的例子。我很想找到在本地拥有BA孩子的父母，可是无论我怎么search都找不到。在外国的support group里，大多数的孩子都已经经历了liver transplant，只靠kasai手术活到大的没几个。

穿针引线，我从朋友那边认识了跟我一样拥有BA孩子的SJ，我很期待地想听她说手术后怎样的状况是代表在康复中。谈了一下后发现，她女儿也已经liver transplant了。做了关于liver transplant的资料收集后发现，一项liver transplant的手术在5年前已经要价SGD150k+了，还没包括之后的复原follow up费用。这数字对于现在的我们来说，无疑是个天文数字。关于liver transplant的资料收集得越多，我越感到寒心。上个月的新闻，一名16岁的男生被诊断只剩下2个月寿命，必须换肝，而换肝的费用高达了66万马币，也是去新加坡做活体捐肝/换肝手术。
其中留言者的疑问，“为什么一定要去新加坡做？马来西亚没有这个技术吗？” “66万手术？骗钱吗？”

听说Selayang医院是有换肝手术，不过好像是需要已经往生了的捐赠者，并没有提到能够活体捐肝。我心里想，如果有，难道他们会不想在这边动手术吗？你我都心里有数我们的国家是怎样的。现在的我们只能祈祷/拥有信念，我们的女儿不需要走到那个地步。

对于BA这个病，根据统计，做了kasai手术后90%的患者将会经历换肝（时间迟早），只有7%的是能靠这手术活到最后。我希望，女儿是那7%里的其中一个。

https://www.facebook.com/sfipibgmed

http://news.sinchew.com.my/node/332798
希望这位男孩换肝手术成功，远离病痛。


I been busy researching for more information about her Biliary Atresia. I joined a support group called Biliary Atresia Network, based of western country. I studied about others BA baby stories, good or bad. I was dying to look for a support group for my own country but I can hardly find any. In the group I was in, most of the BA babies were post-transplant.

I got to knew SJ from a friend of mine, her daughter was a BA too. I was looking to hear about her successful kasai story but end up I found that her daughter went thru transplant as well 5 years ago. While she mention about the cost of the liver transplant, it was around 150k sgd, and its not included the post-transplant follow-up medical treatment and medication. I felt really scared about the amount. I remember that I read some news regarding a 16yo boy who needed a transplant urgently cause his diagnosis of life expectancy was 2-3months. He need 660k ringgit for living donor liver transplant. Some of the comments of his fund raising news , "Why must go singapore for it? Can't just do it in Malaysia?" "660k? scam?"