Wednesday, July 6, 2011
Joseph's liver biopsy showed a reduction in the number of bile ducts consistent with Alagille Syndrome. The doctors are not 100% sure that Joseph has Alagille Syndrome, but it seems like the most likely diagnosis to them at this point. We are to return to Auckland so that Joseph can undergo tests to confirm this diagnosis. Richard, the girls and I will also need to be tested for this genetic disorder. There is a broad spectrum of severity for Alagille patients and there is no way to predict right now how intensely Joseph will be affected by it. Richard and I know very little about Alagille Syndrome in general or about how it is affecting or will affect Joseph - the doctors from the hospital did not end up calling us as planned; once the call was two days late we contacted the pediatrician who first caught Joseph's liver problems and he obtained the biopsy results for us. He did not have too many specifics on how the specialists planned to proceed, etc... other than that they would need to do further tests on Joseph and the rest of the family, probably in the middle of the month. We hope to speak to the specialists this week.