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I still remember the day I got the call that we needed to have my son evaluated further because his lab work came back showing issues with his liver. I don’t think it’s a day I’m ever going to forget even if I wanted to. When my son had his first medical liver evaluation, it restarted our entire life as we knew it, with now having to manage Alagille syndrome (ALGS). 

I was going about my normal, everyday life the day I got the call from the pediatrician that they were concerned about his liver numbers, and we needed to get him to the nearby children’s hospital immediately. It took me a few minutes to think everything through, but there was no way I was able to fully process the news. I am an individual living with anxiety, so getting this news made my stomach hurt, it was hard to breathe, and I was in full-on panic mode pleading with everything inside of my being for there to not be any issues. 

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I remember calling my husband and telling him he needed to come home from work and go with me to the hospital. I briefly explained the situation and how serious it could be, but it didn’t seem to affect him in any way. My husband deals with these situations differently than I do; he had no concerns and was very lackadaisical and thought I could go alone. 

I immediately came home and sat my son in his bouncer chair. I don’t remember what I did with my daughter since she was home with me, but my oldest daughter was at school. I was calling and texting family members so I could make arrangements for them to watch the girls and get my oldest daughter from school so we could go get the testing we needed. I can clearly remember sitting on a yoga ball between my kitchen and living room, bouncing, and Googling every single detail I could about what we thought at the time was biliary atresia as well as other liver conditions. 

When we got to the hospital I was beyond nervous. We didn’t have any wait time, so things moved quickly. During the scan is the point I feel that I became a master at reading people’s faces. I studied the ultrasound technician very closely and could tell by her face something was wrong. Even though I couldn’t understand or read the images it was clear to me it was not good. My gut was right because once we made it home the pediatrician called and confirmed it wasn’t looking good and we needed to undergo more tests. 

That evening I sat with my family and my husband ordered pizza for dinner. I cried the entire night and pretty much the entire weekend and canceled any plans, like the baby shower I was supposed to attend. I wasn’t in a good place and didn’t want to live like this. I didn’t want to be in a position where I had a son who had medical issues and was in and out of the hospital and where I feared for his life daily. I couldn’t imagine how I was going to be able to handle it and what my next steps were going to be. I felt like I was dying inside, and my life was changing forever. Besides feeling hopeless, I also was determined to do whatever I could to get my son the help he needed to thrive and survive this life. We needed to start by getting him a diagnosis.