Storm (Ohio)

Storm was born July 1992 after a very tough delivery he weighed 8.8 lbs. He was jaundice almost immediately I was told to put him is the window for some sunshine upon being dismissed from the hospital. I took him for his 10 day check up still jaundice and not back to his birth weight the doctor sent us for blood work. Before I even made it home the doctor had called my house and left a message to return to the lab so they could redo labs. This time to wait for the results also bring clothes to go to Childrens Hospital. WOW talk about scary I was freaking out. Needless to say it was one VERY long night at Children’s that night. We were finally admitted for 3 days after many test and many more blood test still no answers but were told probably Biliary Atresia. What the heck is that? Of course the doctors gives you all the worse case scenarios and a little book with all kinds of terrible information in it. You know that was before everyone had computers. For the next 3 weeks we would drive to Columbus and have labs. finally the number weren’t coming down so a HIDA scan and a biopsy was order. With in a few days he was in surgery for a Kasai at 7 weeks of age. His color turn normal within days and no yellow eyes. We were in the hospital for 10 day then released. Left with many medications and that NASTY formula pregestimil. We were very fortunate that my husband had really good insurance they paid for all medicine, vitamins, formula, and pediasure with a medical necessity form from the doctor. At that time we were told he would probably need a transplant by the time he went to kindergarden.He had 2 hospitalizations as a toddler for cholangitis but nothing since then. He also was very small 10% and falling off the growth charts so he was tested for growth hormones. He ended up taking growth hormones for 3 years and now is average size. Other then that he has been very healthy. He just had his yearly check up at the GI clinic in October 2010 labs were normal and this ultrasound was great. Now we are trying to transition to a hepatologist/ transplant center for adults since he is 18.I thank God everyday for the doctors catching it so quickly and knowing to send us to a facility where they were equipped to deal with this kind of problem.He has lived a very normal life and will be graduating this year from High School and planning on college next Fall. God has Blessed him so much!!


  1. Posted on December 17, 2010 at 2:15 pm by maureen

    so happy he is doing so well i too have a grandson who has this ilness he is fourteen and doing well