Need help with Biliary Atresia & Cholangitis

[sdao]

My son was diagnosed with Biliary Atresia after 1 month old. He was jaundice 3 days after birth but Dr. Couldn't figured out for sure if he has biliary atresia until he was about 1 month and a half and a Kaisi procedure immediately after the exploratory procedure to diagnosed the disease. After the procedure he has leaking of the bile due to lose suture areas where the intestine attach to the liver. So they had to do another exploratory surgery to suture the lose old suture areas. ~5 days after the 2nd surgery we got discharged and went home. On that sane day my son got a fever and we went back to the hospital for cholangitis. 2 months later, last few days my son has fever again. His pediatrician and GI specialist kept on telling us that it's most like due to a viral instead of bacteria and told us to just take him home and continue to monitor him and check back with her 3 days later. However, that night after seeing the doctor my son starting to jerk and twitch and in the morning his temp increased to 105 peripherally. Finally we decided we just going to take him to ER and he was diagnoses with infection that now spread into his blood. I'm very nervous about not having the right medical professional who are always on top of this things so this won't happen again. I'm very scared and worry about his conditions. Is he going to live? Where do I go to find supports or expert in these field near where we live (Sacramento, CA)? Is there a support awareness group where parents of children with biliary atresia connect?

[kirsteycarpet]

Hello there. I am Kirstey and I live in the UK. This group is part of the Children Liver Disease Foundation and is UK based but as a fellow parent of a child with biliary atresia I am more than happy to connect with you for support. We have a liver parents group on Facebook which is absolutely fantastic. There are about 100 of us where we can air our thoughts, however trivial they may seem to each other. My daugther is 8 years old and was diagnosed with ba at 6 weeks and her kauai procedure. This did work for 6 months and her jaundice went away. However, she went on to have a liver transplant at 18 months old due to her liver not being very strong. She is now 8 years old. She lives life to the full, she swims, dances, skis and we are coming to USA in a few weeks to swim with dolphins! It is a terrible time for you at the beginning as it is a complete shock and unknown, I know it was for me. The first year is a minefield but we can all be here for support for you. On Facebook we are under Liver Mums. It is a closed group so you will have to be added.

[ConsMum]

Hi, Kirstey is quite right that connecting with other families online can be a great help and support and there are US groups which may be more relevant for you, especially for you to find people close to you. (One of the groups is called LiveR)

I also wanted to let you know about two websites, that also have links on facebook etc which are Biliary Atresia Awareness & Research and baaware. If you google both those names you should be able to find them easily. (Sorry we can't add links on here) Hope things settle for your son soon.

Jo x