High direct bilirubin?

[Kmp2019]

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.

[Leef]

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!

[Kmp2019 in reply to Leef]

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.

[FannyW in reply to Kmp2019]

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.

[FannyW in reply to FannyW]

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

[Kmp2019 in reply to FannyW]

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

[FannyW in reply to Kmp2019]

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.

[Lois-Cldf Partner]

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

[Kmp2019 in reply to Lois-Cldf]

Tennessee

[Lois-Cldf Partner in reply to Kmp2019]

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

[Cdemar]

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

[Christian_mom]

Greetings from Brazil. I have a baby girl in this situation: direct bilirrubin high, liver markers high, but image exames do not show nothing at all. Now she will have a biopsy.

I hope all your babies are fine.

[Babylove23]

Hi! I know it’s already been a year. How’s your son? It just so happen that we’re in the same situation as you were with your son. a year ago. The investigations part is really scary...

[FannyW in reply to Babylove23]

Hi Babylove23, I answered this thread about a year ago since my daughter also had very high bilirubin. We were lucky to have a nice doctor who we could talk to and ask questions. It’s not so easy to understand what all the tests are for, it’s a bit of a detective-work.

We gone throw hida-scint and a lot of blood-test and a sweat-test. She is now 13 months and her bilirubin- and livertest was normal when she was 3 months, we took a couple of more blood-test for liver status and when she was 8 months old doctors told us she didn’t have to run more tests. They couldn’t find anything wrong with her and now she’s fine.

The only thing they found besides the high bilirubin (that affected the liver) was lack of B-vitamin (I’m vegetarian and I breast-feed her). So both she and I got some pills for that and now she eat meat.

I think I know how you feel. I wasn’t in a very happy place by then. But you know you have a beautiful little person that depends on you and you will go through this together.

[Sandipmoredw]

Please don't be panic !!!

Please observe below things carefully for coming week.

please see if you get any good gastroenterologist pediatric in case any of below sign :

1. If he passes white or gray stool then immediately report to doctor,

2. Check his urine as well dark yellow is not good

3. Check his eyes if it's becoming yellowish or not

I hope and pray everything will be all right for your loved one !!

[Babylove23]

Thank you for your well wishes for my son. He again had a repeat blood test which showed improvement in bilirubin levels but ALT and GGT increased significantly. Doctors doesn’t know the reason of the increase. But we’re hoping for the next blood test everything will be okay..