3/8/2004 3:21:00 PM

posted Feb 8, 2011, 6:05 PM by Becca K.   [ updated Feb 8, 2011, 6:07 PM ]
She was born 5 weeks early, because I had developed pre-eclampsia.  On day 2 of her life she was sent to the NICU for jaundice.  She began her stay there under the UV lights, like any other jaundice case.  After a few days, they did a full blood work-up.  Her GGT level was around 1700 (normal is 5 - 55), letting the doctors know that something else was wrong.  After 3 inconclusive ultrasounds, she had a HIDA scan, and then a cholangiogram and biopsy on October 13, 2003. 
We were referred to a wonderful team of doctors at Children's Memorial in Chicago.  The first biopsy was inconclusive, at first we were told it might be Cystic Fibrosis.  So genetic tests were sent away, and those took 6 weeks to get back.  The results came back negative, so we went to Children's for a follow up.  During the exam Natalie happened to have a dirty diaper, the doctor took one look at it and rediagnosed her with Biliary Atresia.  She was admitted, and had another biopsy, it was again inconclusive. 
She then had a cholangiogram followed by a Kasai Operation on December 19, 2003.  Her surgeon, Dr. Superina, called her's a case of "correctable Biliary Atresia." She got to come home on Christmas Eve.  What a wonderful Christmas present!!! Natalie still has cirrhosis, but her bilirubin levels are at a normal level.  Only time and Natalie will tell what the future holds...
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