The story of Joan
Johann Mikhail joined our family at 7:41 PM of March 14, 2015, and he was born at 38 weeks through cesarean section. He is a beautiful and sweet boy and I am blessed to have him my life. Despite being a struggling single mother, seeing him in healthy and happy makes all the hardships worth it.
When Johann Mikhail was a week old, my family noticed that his eyes and complexion were becoming yellowish. The pediatrician explained to us that Johann had jaundice, and we only had to expose him to sunlight so that his bilirubin levels (a liver byproduct which causes jaundice) would eventually go down.
However, Johann’s jaundice wasn’t cured. On his second month, we decided to bring him to another pediatrician, where he was immediately sent to the laboratory for his blood work. Hearing him cry while I watched him get his blood drawn was very painful for me, and I actually thought I could handle it. I could not.
The Pediatrician was alarmed because of his very high bilirubin levels. From there, we decided to bring him to a bigger Hospital, and Johann was assessed by the Gastroenterologist Team (GI). Johann had another series of blood works. He was confined and was set to have a liver biopsy along with many other lab tests to monitor his condition.
On July 4, 2015, he had been diagnosed to have Biliary Atresia, a rare life threatening liver disease that affects newborns. It is so rare that it only affects 1 out of 18, 000 infants. The Kasai Procedure could have been be done to minimize the liver damage, but it was only done for infants up to 2 months of age. At the time of the diagnosis, Johann was more than 3 months old. Johann did not qualify for the procedure. He also had recurring infections and surgery could not be done.
The doctors explained that the ultimate cure for Biliary Atresia was a liver transplant. Babies who did not undergo Liver Transplant are not likely to live beyond age two. The Liver Transplant operation would cost millions of pesos. As of now, he’s undergoing constant follow up checks for close monitoring and taking series of medications to keep him strong and fit while waiting for his transplant.
But even with the medications, we cannot do much more to ease the pain he is going through. His jaundice still persists and his tummy continues to grow bigger. He continues to lose his weight too, no matter how good his appetite is. At 11 months, he can’t even sit still. He also can’t play or mingle that much with other babies because of his weak immune system. But despite all of this, he can still manage to put a smile (or even a laugh) at his face to make us happy.
My baby is the strongest person I have ever known. He’s such a fighter, and we will continue to fight beside him.
If your heart moves to give, you can help us with win his battle with Biliary Atresia. See ways on how you can help baby Johann at www.facebook.com/hopeforjohann.