Pregnancy with Brycen was normal and healthy. Birth was just as great! Our doctor was out of town and so we had a different Doctor deliver ( I had seen her every other appointment, so I was familiar with her) and it was by far my favorite delivery. Brycen was a 8# 6 oz healthy baby boy. When we were discharged they said his bilirubin was up but he didn't seem yellow to him so we had to go back each day for a few days for checks. By week one he was so yellow Chad and I were concerned and took him in. His level was 21 which is almost danger zone. We were admitted to do phototherapy for 2 days. His levels had gone down enough we went home with the Bili blanket. Then they felt like we were okay and Doctor thought it could be breastfed jaundice. Brycen wasn't gaining as much weight as he should either. In fact he wasn't to birth weight until 5 weeks. So we were just going with the doctor as breastfed jaundice.
After my 6 week postpartum check I had 4 migraines in 2 weeks?! Something had to be going on. So I scheduled with the doctor that delivered (our regular doc is on vacation) they figured out my problem. However, they noticed brycens eyes were still so yellow.(which they weren't improving) so she insisted a doc see him that day. Doctor carter ordered a panel of blood tests and all his liver levels cane back 3-4 times what they should be. So we had an ultrasound and things looked normal. Then we met with the doctor and he instantly said you are headed to primary children's. I'm concerned this could he biliary atresia.
Pam had come to the ultrasound and the doc appointment with me. So she also drove to SLC with me. We had to go home and pack as quick as we could. PCMC was expecting us in 4-5hrs. Chad arrived shortly after we got there. Within 10min they team of 4 doctors were in our room and describing all the possibilities with a heavy emphasis on biliary atresia. An ultrasound was done again the next day and they too saw no gallbladder. On Monday they did a liver biopsy which with came back average to light scaring. We were released for a day and a half until surgery. It felt so good to get out and do some shopping. Thursday he had surgery which was about 5 hrs. It was confirmed no gallbladder ( which is not normal to be born with out one) and this confirmed biliary atresia. Surgery went well and everything was just as expected. He had a small blood transfusion, which is normal in this surgery. He is in the PICU today and doing well and should get the breathing tube out today and moved to a regular room.
The kind of surgery needed to fix the problem is called a kasai, where the cut out he bile ducts on the outside that are scared and not working. They then take the intestine and attach it to the liver so it can drain. There is 1/3 of a chance of being completely successful, 1/3 never working and needing a transplant, 1/3 working for a while but resulting in a liver transplant. Biliary atresia is a very rare condition it's about 1 in every 15-20,000. It is also very serious. We will have many check ups at primary children's. We are so grateful to have been lead by three spirit and for Dr. Tomlinson who saw a concern and Dr.Carter who took the time in his very busy schedule to get us in. We are truly grateful we are at primary's and have the doctors we have. Brycens liver Dr is amazing and so was the surgeon.
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