Log in
Children's Liver Disease Foundation
1,394 members565 posts

High direct bilirubin?

Our little man is 2 weeks and 5 days old. At 3 days old he was put in the nicu with a high indirect bilirubin and obvious jaundice. Since then we have switched to formula and his indirect levels are good. However his direct level has went from 0.3 to 0.9. The doctor said this isn’t an alarming rate, but is referring us to a pediatric GI. I can’t find anything online that says what is considered a high direct level? Does anyone have experience with this? We are so worried.

10 Replies
oldestnewest

Hi kmp2019! Hopefully you have nothing to worry about. When my son was around that age he was jaundice as well and his doctor initially thought it was breastmilk jaundice, so that's what your little one may have. Normal direct bili is 0.0-0.5. My son's direct bili at 2 weeks was 9.7 so that's how we knew something was wrong. I'll say a prayer that your little one will be just fine! Hope this helped!

Reply

Thank you for your reply and prayers. I hope your son is doing well! Today we had our follow up and the doctor said the direct is still rising but nothing extreme. The ultrasound looked good, but he wants bloodwork again next week and if it’s still elevated we will have a HIDA scan. Today he mentioned “a liver disease that could be a possibility, but we have months before we need to take action.” I know he is referring to BA because he said it can be corrected but might have effects later on. Hoping the ultrasound is an indication that things are ok.

Reply

Hi Kmp2019, I live in Sweden so I’m sorry if my english isn’t so good. My daugher is 5 weeks old and she has a conjugated bilirubin level at 0.34 mg/dl. She has been on this level for at least two weeks now and we did a hida scan this Tuesday.

There was nothing wrong with her bile ducts, so that’s a relief. I was so afraid that we had to go trough surgery with short notice. However I’m glad that they tested her so early, so we at least had a chance to have the surgery before it’s to late, if that would have been the case.

Now the doctor runs a lots of tests to see if the condition is metabolic or genetic.

Acctually, the hardest part with the scan was to get the needle in for the radioactive fluid. Babies have so small venes they tried many times on my poor little girl. Finally they sent us to a nurse trained in emergency surgery on children and she managed to do it.

The scan took one hour (sometimes they need you to come back but we didn’t have to) and my girl slept through it. I fed her before and rolled her up with blankets on the radiation machine and sat on a chair beside and hold her.

I hope your sons bilirubin gets better, it’s heart breaking when you worry like this and can’t do anything to help them.

If you have questions or just want to chat I’m here for you. They will test my daughters bilirubin on Monday again.

Reply

Her conjugated bilirubin is 3.34, I’m having a hard time convert from umol/l, so a lot higher than your son’s.

Reply

His total is 3 and his direct is 1.6 now, which still doesn’t seem high to me. We are scheduled for the HIDA scan next week. Thanks for sharing your experience. It makes the scan seem a little less scary :)

Reply

How are your son and you doing? Could they see antyhing on the scan? My daughter had a heart ultrasound yesterday that was normal. Her total bilirubin is now down to 2,2 (conjugated still high 1,4) but at least better.

Hope you are ok. It’s tough! We take blood once a week to check her bilirubin and livercells status. I use a Emla cream on her hands, when they take blood iv, and it really helps. Last two weeks she hasn’t cried at all. They want her to do a sweat test and also to check her eyes in te next two weeks.

Reply

HI KMP can I ask what area you live in? - Lois x

Reply

Tennessee

Reply

although we are a UK based charity and can not post to you, you can download our information resources for free from our website childliverdisease.org

Reply

The same thing happened with my little girl around the same age. She was hospitalized for 24 hours at 3 days old for high indirect bilirubin but after that during our follow up blood work we noticed direct bilirubin climbing. It went to .9 just like yours. We got an ultrasound which came back normal and in the period off about a month the direct bilirubin bounced between .4 and .9 but then it finally went down just on its own. We didn’t change anything. Our doctor had mentioned lots of scary things and talked a lot about that it is concerning if the direct bilirubin is more than 1 or 20% of the total. I was worried sick and couldn’t find any info on the internet about direct bilirubin levels. Sorry I don’t have a better more educated answer for what made it go away but know I was in the same position and it is ok now :)

Reply

You may also like...