Posts Tagged ‘metabolic disorder’
Sick baby update for April 24, 2009
In my last post on this topic, I said,
To me the child’s life force seemed strong, almost as if the whole liver deal is just an annoyance, an inconvenience to him.
Maybe I was a wishful thinker. Maybe I was right.
I was back in the hospital with the family yesterday. The doctors now believe that, unrelated to his biliary atresia, the baby has a rare inherited metabolic disorder. They said that there is only a 50% chance of ever learning what disease it is. The disease could be fatal in its own right or be fatal by preventing the baby from getting a liver transplant, which he will eventually need. The doctors have begun a series of tests, and it may take up to six months to identify the disease or run out of diagnostic options.
For the baby’s sake, I am still hoping that I was right the first time. I refuse to give up hope.