Evan (Utah)

Evan was born August 6, 2003 a very healthy, happy, beautiful baby! He had perfect features, perfect olive skin, we couldn’t be happier. He was a very good natured, happy boy. He slept a lot, he loved to eat and be held A LOT :) . He was growing normal and everything was fine….until about 7-8 weeks old we noticed his skin starting to turn a bit yellow (yes, jaundice), but not like when a baby is born and is jaundice. He progressively got more and more “yellow”, turning almost “green”. We (his daddy and me), took him to the doctor, but really we were not very concerned since he was eating and growing normally. The doctor had a blood test ordered and his bilirubin was elevated, but nothing the doctor was “concerned” about. So we didn’t worry. Time went on and still Evan was “yellow-green”, but still happy and growing. At almost 4 months of age now, we took him for probably the 4th time to the doc for the same reason, this time the doc said we needed to vist a GI (liver) specialist at Primary Children’s Hosptial in SLC, UT (we live in Roy, Ut). We had an appt scheduled for the following Monday, still not overly concerned. When we arrived for Evan’s appt, they examined him, sent him for blood and “sweat” tests, and urine samples. They kept asking us if his stool was white, which it wasn’t, just kinda green ( I know that sounds gross, but many things about this disease are not pleasant). Anyway, they admitted Evan into the hospital that day, the next day he had a biopsy of his liver done to determine just exactly what was going on. WE WERE SCARED TO DEATH at this point. We kept hearing the words “liver failure” and “transplant” and “surgery” and we just thought we were here for an appt to maybe get some meds for him. 3 days after we first arrived and had not left the hospital at this point (Evan has an older sister, Nicki, who luckily was at her grandparents during this entire ordeal), the GI doc came to talk to us. We were still very optimistic, but when she started explaining what was wrong, our worlds collapsed and would never be the same again! Evan was diagnosed with BILIARY ATRESIA! What in the world is that, were exactly our words!!!!!!!! Basically Evan’s external bile ducts exiting the liver had disinigrated, not allowing any bile to leave his body. His body was poisoning itself! HORRIBLE! Now think at this point there was no Facebook to discuss all this with people around the world and really still not a lot on the internet about it, we were very lost! We were told we had 3 days to decide on a liver transplant or a surgery called a “Kasai” procedure. The surgery would create a “new” bile duct by taking the intestines and attaching it right to the liver. OF course we know what a transplant would entail. (Later his doc told us by the time we arrived with him at PCMC he only had about 3 weeks to live (…. We decided after so many prayers and thought to go ahead with the surgery since we weren’t sure if he could wait to recieve a transpant. On December 9, 2003 Evan had the surgery that saved his beautiful life! Within 24 hours, his color returned to normal, he plumped right up (he was only 11 pounds pre-surgery), and was smiling like he felt soooo much better! Evan has had so many up’s and down’s since then, but we know we made the right decision. Usually the Kasai doesn’t last too long, but Evan is now 7 and still going strong with his scarred liver. He had been admitted to the hospital so may times for various reasons, portal hypertension, ascites in his abdomen, colongitis, 2 broken arms from the brittle bones, and more I can’t even think of right now. The doc says a transplant is still in his future, but for now we just watch him and hope for the best. He is a very smart boy, he has been a little delayed from the many hospital stays, but with therapy from great people he has caught up just fine and in in regular 2nd grade and doing great! He even plays soccer and is in Tae Kwon Do. He will be limited in the future in contact sports and he has to be very careful not get get a blow to the abdomen (his spleen is about 3 times the size it should be), but all in all, he’s a normal, happy 7 year old! We have 3 children, Nicki who is now 10, and Cy who is 3 (Cy was born with a heart defect called Tetrology of Fallot, but after open heart surgery at 5 months old, he’s super healthy!) Thanks for the support, I know I didn’t say everything, if you have questions, please feel free to ask!


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