Battle against BA
My daughter, Seanen Megan, has been diagnosed with biliary atresia. She got jaundice during the first week after birth and eventually it was gone. But a few days before she turned 2 months, I noticed that she was jaundiced again, her eyes were yellow, even the inside of her mouth was yellow. I immediately told her pediatrician about this. She required a bilirubin test and the result was high. We were referred to a pedia-hepatologist (we only have 1 pedia-hepa doctor in our country) which immediately told us that our daughter should undergo liver biopsy. The result shocked us because she has giant cell hepatitis and some bile duct proliferation. Everything has been so fast, we found ourselves in the hospital once again for Meg's Kasai operation. At 2.5 months, I can't imagine my child undergoing such a major operation. The procedure took about 5-6 hours, we were told that she lost a lot of blood because the portal vein was hit or something. I was really crying, I pity my child, I just can't imagine how painful it is. She had a blood transfusion and after the operation, we were told to stay in the recovery room for the next 24 hours.
We were really praying hard for her to be okay. But upon reading and doing research, I've found out the end-stage of biliary atresia is really liver transplant. And that the Kasai Procedure is done just to "buy time" and stop the progression of liver damage. It is a sad reality that we have no liver transplant facility here in the Philippines. And that cases of biliary atresia-liver transplant are usually done abroad. Many middle to lower class families can't afford the transplant. They have to raise funds and beg/ask for help from different people, organizations, and foundations just to raise the 4 million Philippine pesos.
This reality has really bothered me. What if it is time for my child to have the liver transplant? How can we afford to have it?
Everyday we are praying hard for her to be okay and that she'll no longer have to be transplanted. I know whatever happens God will also be at our side and that He will always bless my family.