Bilirubin encephalopathy

Bilirubin encephalopathy, also known as kernicterus, is a serious brain condition that happens when very high levels of bilirubin — a yellow pigment made when red blood cells break down — build up in a newborn baby's blood and enter the brain. Normally, the liver processes bilirubin and removes it from the body. But in some newborns, bilirubin builds up faster than the liver can handle, causing a condition called jaundice (yellowing of the skin and eyes). If jaundice becomes severe and is not treated quickly, bilirubin can cross into the brain and cause permanent damage. This is called bilirubin encephalopathy or kernicterus. The brain damage from bilirubin encephalopathy can affect movement, hearing, vision, and thinking. Babies may show signs like extreme sleepiness, poor feeding, a high-pitched cry, arching of the back, and seizures. In the long term, survivors may have cerebral palsy, hearing loss, problems with eye movement, and intellectual disabilities. Treatment focuses on lowering bilirubin levels as quickly as possible. The main treatments are phototherapy (special blue lights that break down bilirubin in the skin) and, in severe cases, exchange transfusion (replacing the baby's blood to rapidly reduce bilirubin). When caught and treated early, the outcome can be very good. However, if treatment is delayed, the brain damage can be permanent. Prevention through careful newborn screening and monitoring of bilirubin levels is the most important tool we have.

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Bring these to your next appointment

• Q1.What caused my baby's bilirubin to get so high — is there an underlying condition we should test for?,What parts of the brain were affected, and what does that mean for my child's development?,What therapies should we start right away, and how often will my child need them?,Does my child need a hearing test, and if there is hearing loss, what are the options?,Are there any signs I should watch for at home that would mean I need to call you or go to the emergency room?,What early intervention or educational support programs are available for my child?,If we have more children in the future, are they at higher risk for jaundice or bilirubin encephalopathy?

Common questions about Bilirubin encephalopathy

Related conditions

Other rare diseases commonly researched alongside Bilirubin encephalopathy.

• Crigler-Najjar syndrome→