Does elevated conjugated bilirubin in newborn always mean liver disease?

[scoopst]

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.

[McSousa]

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.

[scoopst]

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.

[McSousa]

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.

[scoopst]

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.

[vigneswaran in reply to scoopst]

My baby is also having similar issue and we are having an appointment with liver specialist in 2 days. Did your doctor find the root cause of the problem and solve it? What was the problem?

[McSousa]

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.

[GodwillHeal]

Hello scoop, i know this post is 4 yrs ago, my son have the same case, his direct/conjugated bilirubin is elevated but still waiting for an appointment to specialist. I am scared on what the doctor will possibly say. How is your baby girl? hope she is doing fine... i will appreciate your reply if you have a chance to bump on this message

[Marilynrocks111 in reply to GodwillHeal]

Hi! My daughter has the same thing. How is your baby doing? Did it clear up, require surgery? Any info will be appreciated. I have an apt next week to repeat test if it’s still elevated I have to go to GI and pediatric surgeon. She was in NiCU for a week and she is now 4 weeks old. Indirect bili was high but is now normal but the direct one is elevated. Hoping it goes down by next week!

[TLondon88 in reply to Marilynrocks111]

Hi both - my baby girl has elevated levels conjugated levels as well. We had a clear ultrasound but waiting on the rest. Could anyone provide any updates on the diagnosis received for your little ones? I am so anxious and would really appreciate hearing some stories. Doctors are being very evasive so far

[TLondon88]

Hi everyone - my baby girl has elevated levels conjugated levels as well. We had a clear ultrasound but waiting on the rest. Could anyone provide any updates on the diagnosis received for your little ones? I am so anxious and would really appreciate hearing some stories. Doctors are being very evasive so far

[scoopst in reply to TLondon88]

So sorry to hear you are going through this! Make sure you are getting answers from the doctors. I’m not saying this is your case but for my daughter it ended up being biliary atresia and she had a liver transplant at 7 months old.

The positive news is my daughter is now 8 (will be 9 next month) and is thriving! She got the transplant and we never looked back. Aside from blood draws every three months and a small dose of anti-rejection medicine 1x a day (oh and a big scar on her belly) you would have no idea. It was very scary at the time but we have come so far.

Again, this is not to scare you at all as your baby may have something else but just wanted to share so that you know if it does end up being something serious there is hope and don’t feel helpless.

I hope everything turns out well but make sure you are seeing the right specialists and push for answers if they aren’t being straightforward.

We are in the US and took our daughter to Lurie Childrens in Chicago. They have a ton of experience with this condition and do a large number of pediatric transplants as well.

[TLondon88]

Thank you so much for your response, I really really appreciate it. Its such agony as even when you get some answers they don't necessarily mean much. I am so happy to hear your daughter is all grown up and thriving, it warms my heart. Do you recall anything about your situation at first as we are at the 5 week mark too? How high were the bilirubin levels? Was stool colour fine? I look at my daughter and find it so hard to believe she is unwell as she looks so perfectly healthy. My heart is in my throat

[scoopst in reply to TLondon88]

It’s all a blur to be honest. I don’t remember her levels but I do remember she looked quite ill. Very yellow tint to her skin (and whites of her eyes). After a while her belly started to be distended and she wasn’t gaining much weight. I don’t remember if that was right away though or later. Her stool was also quite pale. I don’t miss the days of sorting through her diapers to take pictures of the poop for the doctors!

[TLondon88]

I am really sorry I don't want you to start relieving those days. And I really really appreciate your responses. When was your daughter finally diagnosed? I am worried that although the ultrasound is clear they might be missing something. Sounds like your ultrasound was fine at the start too?

[scoopst in reply to TLondon88]

You don’t need to apologize! I think at 6 weeks they had a good idea. Had a Kasai procedure at 8 weeks that never really worked or helped

[scoopst in reply to TLondon88]

I remember ultrasound being unclear. They thought maybe a cyst but surgeon didn’t think it was a cyst and he was right.

[TLondon88]

Thank you very much. Sending my love to you and your daughter