January 1998, my sister gave birth to a beautiful little angel, no one knew that time our little angel has an inborn disease, "Biliary Atresia" a rare disease of the liver and bile ducts that occurs in infants, affecting 1 in 8,000 to 1 in 18,000 births worldwide. It also has abnormalities to other organs, such as heart defects and issues with their spleen. At an early age, my niece suffered from this disease. How we found out that she is carrying this disease? Two weeks old my sister noticed that the pooped of her baby is colourless and my mother told her to bring Jasmine to Doctor because it is abnormal to have poop like that. And she underwent to different test and procedures until they found out that she has a biliary atresia disease. The Doctor told them, Biliary atresia is an irreversible problem. There are no medications that can be given to unblock the bile ducts or to encourage new bile ducts to grow where there were none before. Until that happens, biliary atresia will not be curable. However, two different operations can be done that will allow her to live longer and have a better quality of life. The two options, Kasai portoenterostomy or liver transplant. It was 30/70 chance for her to live because of her young age may be the body cannot take it but there was no other option.
They agreed to Kasai portoenterostomy. This operation connects the bile drainage from the liver directly to the intestinal tract. It is most successful when done before an infant is 3 months old. This procedure is helpful because it can allow a child to grow and remain in fairly good health for several years. Eventually, cholestasis (backup of bile in the liver) will occur, causing liver damage.
March 1998, she has undergone her first operation at the age of two months old in Philippines Children Medical Center. Not financially stable and the chance was little but with the helped of the Doctors, nurses, family, friends and especially our Almighty Creator, she survived. Imagined out of 36 babies who undergone with the same disease and same operation that time, she was the only one who survived. But it was just the beginning. After how many days of the operation one nurse accidentally gave her milk and it was not allowed to give her yet. Another operation again because her belly became bloated and it was dangerous. and she survived again. With the little body and still not aware of what was happening to her body and to her surrounding all she knew that time is to fight and to survive. Days, weeks, months and years passed still in the hospital. I remembered on her 1st birthday in the hospital with the dextrose on her head because they cannot find more veins to her hands or even feet with that small body and the pains she felt that time she can managed to give us a little smile. She is really a fighter.
After more than 2 years, at last, she came home. Every day was not easy but my family did the best for her. She grew up like other kids trying to be normal and healthy. Every time, We brought her to hospital and her life is 50/50 again the doctors always telling us to be ready. The words from the different doctors were not easy to handle like her lifespan is only until 7 years old or 10 but God is really good she gave her more strength to continued her life. I remembered when she was in grade 6, another attacked she vomited to much live blood and that time we were in province at the middle of the night so hard because the hospital was little bit far from our house, first we went to a small clinic to have first aid then traveled to neighbor town because the big hospital is there but when we came there was no blood available we stayed like 6 hours waiting for the doctor but all they can do was put some dextrose and gave us ambulance and nurses to accompany us to transfer to another hospital and it took almost 3 hours traveled again. My niece was really weak and still vomiting. She was really toxic at that time. I remembered my money was only 3000 pesos not even enough to pay the nurse who accompanied us and I need to pay almost 20000 pesos to the first hospital, imagined 6 hours only and the amount of our bill was like that. they didn't agree to discharged us without paying but no one can send money at that hour. what I did was to make a promissory note and gave my bank card, I knew to myself the amount that I had there are only 5 pesos. who knew that they will agree. God is really good and merciful. After those things we encountered and the pains and the blood, she lost she can manage to survive. Another problem again, that hospital didn't have some knowledge about biliary atresia, at least they helped my niece to stop the vomiting of blood and made her a little bit OK. They told us we need to bring her to Manila, because they don't have doctors or complete equipment for my niece.. after how many days of staying there they told us that they referred us to this certain doctor or hospital in Manila but the worse thing after 12 hours of travel, they didn't accept us, we begged but they said they didn't receive any referral or calls even we had referral papers that time. no chanced we transferred to another hospital again and when we arrived there were no vacant rooms or even in an emergency we waited for more than 12 hours again inside the ambulance before my niece admitted. Good thing one of the doctors who helped her when she was a baby is still there. When the body of my niece was ready they did the endoscopy to close the varicose veins inside the body of her.. Everything became ok but still they told us that the liver was not working so we need to prepare her and money to bring her to Taiwan for a liver transplant. I knew that my niece is strong even her body wants to give up but the money was the problem.. we went to different government charity to get some help but it was not enough. but you know when the hands of God works there is no impossible. The liver of my niece started to grow again. after 2 months in the hospital, they discharged her, another life again. I cannot say her life is perfect and healthy. From time to time we need to bring her to hospital same incident again but she managed to survive those days.
Time was so fast.. She grew up like us and then another test again. she got pregnant even the doctors told her is very dangerous for her and for the baby.. it happened again. we thought that was the last time we will see her. even her body is not prepared well the doctors need to prepare for the cesarean operation to get the baby alive and no one knows that they can survive both. She is really lucky or maybe her faith is really strong.
Year past and everything was smooth. but the same incident occurred again.. monthly she needs to do the endoscopy and blood transfusion to continue her life. I know, her body is so weak but she is trying to become more strong because not only for herself but also for her little angel. Now because she is 21 years old and PCMC is only for children, we need to transfer her to a new hospital, Metropolitan Medical Center and only a few Doctors we have here in the Philippines who studied or practice with that kind of disease. So if there's a chance we can bring her to abroad for liver transplant and for more medical advance, we will do and all we need now is financial support to make it possible.
From your kindness heart on behalf of my niece, Jasmine Anicete Valerio, I'm asking for your help. We need her daily maintenance and for her hospital needs. If it is possible for her to have a liver transplant. Any amount is really appreciated. Thank you in advance. God bless you.