She had neonatal jaundice with extremely high bilirubin within a few days of birth, but it seemed to be coming down. We were shocked when, three months later, a nurse asked us why Alaina was so yellow. About one month later we received the preliminary diagnosis of Alagille syndrome. We were confused, frustrated, and saddened by the news what we thought was neonatal hepatitis had turned into a rare liver disorder with no cure, which Alaina would have for the rest of her life. We cried a lot during those first few months.
Most patients are small in stature, a result of malabsorption of nutrients and fat-soluble vitamins.
Alaina continued to see her specialists frequently during her first few years. Initially she went at least monthly, then every two or three months. Now she only needs yearly visits. But the road to a relatively stable condition has been rough and frightening for our family. December of 1991, when Alaina started scratching severely and her stools turned white, was a particularly depressing time, but medications got her back on track.