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Elevated direct bilirubin level

melanier26melanier26 member
in Babies: 0 - 3 Months
Hi everyone,

My LO was born 3 weeks ago and at 3 days old was admitted to the NICU for dehydration, hypoglycemia and jaundice. After 5 days we were released because he was doing well with one exception - an elevated direct bilirubin level. This is NOT the level that babies are put under lights for. As of now we are having blood work done every 2 weeks to monitor the level and so far it has been going up very slightly.

They're not concerned with how fast the level is rising (because it's only slowly increasing) but they are concerned because it needs to go on a downward trend and that's not happening. They are saying that sometimes it corrects itself, but sometimes it could be a sign of something more serious. He's been tested for lots of things and so far we have no answers.

Does anyone have any experience with this? Even if not, prayers would be greatly appreciated. Thanks!
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Re: Elevated direct bilirubin level

  • els831els831 member
    edited August 2015
    I'm glad they are keeping a close eye on him. Be on the lookout for symptoms of dark urine and/or pale, clay colored stools. Direct bilirubin can be a sign of lack of bile flow from the liver to the intestines, which sometimes needs to be corrected surgically (Kasai procedure). Tests for this condition would be an ultrasound and HIDA scan. There are other causes of high direct bilirubin (infection, blood disorders, metabolic disorders), but this is the one I am most familiar with. You're in the best possible situation by catching this early and having close follow-up! I wish you the best for your baby's health!

    Edited to add: the name of this condition is biliary atresia.
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  • loflinlauraloflinlaura member
    My baby had it and was borderline for NICU but as soon as I got home I would always have her by the window if not atleast when I would feed her. I breastfed also Wich helped out too and within 3 days she was perfectly healthy no more jaundice and started to dirty/wet diapers so much more. If u do breastfeed make sure the jaundice isn't from that because that can occur too. Prayers for ur LO! I understand how uneasing it is.
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  • AnonymousMomAnonymousMom member
    With a consistently increasing direct bilirubin, like Els831, biliary atresia would be my big concern.  This is usually diagnosed with ultrasound of the liver and as she also mentioned the Kasai Procedure is a surgery that removes the blocked bile ducts and then uses part of the baby's bowel to act as a pseudo bile duct system.  For some kids this actually fixes the bile flow issue and further liver problems don't usually  result. Unfortunately for many kids the Kasai procedure is merely a temporizing measure and these kids will end up needing liver transplant down the road. There is still benefit to doing the Kasai and delaying the need for liver transplant as kids who are transplanted later in life have been shown to do better than those who need to be transplanted very early.  (There is also the issue of having a compatible organ to transplant, although with the advances with partial lobe transplants many kids can receive from a living family donor).

    Since it sounds like your son is already 4 weeks old I would follow up his pediatrician and make sure there is a plan for getting to the appropriate diagnosis quickly. As I mentioned above, the earlier the Kasai procedure is done the better.  There months of age is usually considered the break point where the benefit of the Kasai declines significantly.  
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