Does elevated conjugated bilirubin in newborn always mean liver disease?

I have a 5 week old baby girl who has been jaundiced since birth (can especially tell in whites of her eyes). At the last appointment we had a blood test which showed elevated bilirubin, particularly the direct component (almost 60%). We are set to see a liver specialist next week but I am pretty worried. Everything on the internet says that with conjugated jaundice in a newborn it is never "normal". I am fearing the worst but is there any chance this isn't a big deal. Can it just resolve on its own? I haven't seen anything that says what percent of those with this symptom require serious intervention so it seems like 100%! Thanks in advance.

5 Replies

  • Sorry to hear about your baby and I don't know if it's always liver disease but we do have fantastic liver specialists in this country who will give her the best care if it is. I would say that there is a massive amount of very alarming and unhelpful content on the internet and our inclination is to fear the worst when we know very little so, if you can resist it, stay away from the scary stuff! It seems that everyone is different even if they have similar symptoms so the specialists will take on your baby as an individual. Which hospital will you be going to? Mainly, don't spend so much time worrying about your baby's symptoms that you forget to enjoy her delicious babyhood. Please stay in touch and let us know how you get on.

  • Thanks for the reply. I learned the hard way that looking online is not the answer but after I read all the bad news I was looking for something, anything to say it could be not the worst case!

    I am actually in the US and live in Chicago. I will be going Northwestern Universitys children's hospital.

  • That's the problem with information on the internet, isn't it? If things turn out ok people probably just get on with life and forget to share their good news! It's probably a very good sign that the problem has been picked up early. My little boy's jaundice wasn't really taken seriously until he was 8 weeks old (he has biliary atresia- he's 5 now, goes to school, reads, writes, has friends etc- I'll fill you in another time if you want the whole picture but you have enough to think about now with a newborn!) There'll be great care for your baby where you are, too. Please do let us know how you and baby are doing.

  • Thanks again for the info. We had an appointment with the head of the liver disease team at the hospital here yesterday and we just feel so confused.

    They did an ultrasound of her abdomen but they didn't find much. They thought maybe a cyst but then they consulted with a surgeon who did not think it was a cyst. The doctor also said he could feel our baby's liver was very enlarged. They took more blood to run the tests and then we are supposed to go back in next Monday to see if anything has changed. If things are not progressing we go to liver biopsy immediately on Tuesday morning. We are just scared and the waiting, as you all know, is very tough.

    The doctor seemed to think there was a 50% change she has idiopathic hepatitis that may resolve on its own or 50% a blockage (i.e. Billiary Artresia). I am already preparing for the worst but hoping for the best. I just want to know that if she does have the blockage and surgery is performed that she has a shot of it going well and having lasting improvement.

  • It seems to be very hard for the docs to diagnose because there are so many liver diseases that have similar symptoms but need very different treatments. The biopsy does give a much clearer idea of the problem and I remember it being over so quickly that my baby didn't really notice what was going on- he was a very alert 8 week old. Whatever the diagnosis she has a good chance of doing well- most babies do and will thrive, go to school, college, etc with the right care, but most liver diseases do need life-long treatment and/or monitoring so do be prepared for many appointments especially at first. The waiting is hard but bodies do some things slowly, we've learned to accept as well.

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