What To Know about Bilirubin Encephalopathy & Kenicterus

If you are a parent, there is no doubt that you are familiar with many conditions that may affect your child, including jaundice, a common condition affecting newborns and infants.  In this article, we discuss what you should know about bilirubin encephalopathy (BE), a condition stemming from severe jaundice also known as kenicterus.  This article is designed to answer some of the basic questions parents have about BE and kenicterus, as well as giving you the information you need to get help if your child has been harmed due to BE.

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What is Jaundice?

Jaundice occurs when bilirubin levels in the infant’s blood are elevated.  Most commonly diagnosed after observing the infant’s skin or eyes being yellowed, jaundice is most often considered an easily treatable condition with few risks.  However, when jaundice is not properly diagnosed or treated, bilirubin levels may increase to a dangerous level, resulting in development of conditions like BE.  Remember, severe jaundice may be diagnosed as kenicterusor sometimes hyperbilirubinemia.

What is Bilirubin Encephalopathy?    

BE is a neurological condition occurring in infants, particularly newborns.  Though it is considered a rare condition, BE should be a concern for parents and caregivers when jaundice is diagnosed.  BE causes the infant’s immune system to become compromised, resulting in bilirubin not properly moving through the bloodstream.  Bilirubin may then migrate to tissue outside the bloodstream, particularly in the brain.  This results in BE.

What are the Risks of Bilirubin Encephalopathy?

The primary risks associated with BE are hearing loss, brain damage, or even death.  In most cases, BE is treatable with few risks of long-term complications, but if the infant has other medical conditions or a compromised immune system, the effects of BE may be permanent.

What are the Symptoms of Bilirubin Encephalopathy?

BE is commonly broken down into three stages – early, middle, and late.  As a parent, there are certain symptoms that may be present in each stage, or across all three.  A brief summary of the most common symptoms includes:

  • Early Stage – Early stage symptoms of BE may include jaundice that becomes severe, difficulty feeding, lethargy, or inadequate startle reflexes.
  • Middle Stage – Middle stage symptoms may include high-pitched crying, difficulty feeding, irritability, or hypertonia (hyperextended or arched back crying).
  • Late Stage – Late stage symptoms of BE may include any of the symptoms of the first two stages, as well as additional symptoms like seizures, coma, shrill crying, or inability to eat. Late stage BE is considered extremely dangerous, and can be life-threatening.

How is Bilirubin Encephalopathy Treated?

Treating BE may include several processes and procedures, and most often depends on the overall health of your child, as well as the severity of the condition.  Most commonly, treatment of BE includes:

  • Light Therapy – Light therapy is a common treatment method for jaundice and BE. Light therapy involves placing the infant under special lights that change bilirubin molecules so the infant can process them and pass them through stool and urine.  This prevents bilirubin from attaching itself to surrounding tissue, or migrating to the baby’s brain.  Light therapy is painless, and may be completed at the hospital or at home, depending on the severity of jaundice and your child’s overall health.
  • Intraveneous Immunoglobulin (IVIg) – When jaundice becomes more severe, IVIg may be necessary. IVIg is most commonly used when there are blood type differences between the mother and child, which result in antibodies negatively interacting with the baby’s blood cells.  IVIg treatment is comprised of blood proteins that reduce negative antibodies and stabilize bilirubin levels in the infant’s bloodstream.
  • Exchange Transfusion – For severe cases of jaundice and BE, exchange transfusion may be necessary. Considered one of the most intensive forms of treatment for BE, exchange transfusion includes repeated withdrawal of blood from the infant (in small amounts).  Next, the infant’s blood is diluted to remove maternal antibodies and bilirubin, and then is transferred back to the infant.  This process is only conducted in the hospital, generally, in the Neonatal Intensive Care Unit (NICU).

What Causes Bilirubin Encephalopathy?

While jaundice is often a natural occurrence in newborns and infants, BE is something of an anomaly, and can be caused by non-natural factors.  For example, if your newborn exhibits signs of jaundice but his or her doctor does not diagnose it or treat it in a timely manner, it can increase in severity to BE, putting your baby at risk.  Further, if your infant’s healthcare provider does not realize the severity of jaundice or BE, or other conditions that may exacerbate the situation, your infant may be placed at risk for a wide variety of dangerous side effects.

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Any time your child is sick, you know how important it is to get medical attention right away, and address any concerns you may have about complications.  Any time you feel that your questions are not being answered, treatment is not being provided as needed, or that your child’s health is in danger, you should act quickly to get a second opinion and explore your options.

What Can I do if My Child has Been Injured?

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In addition to exploring your options for the best healthcare possible, you may also find it helpful to seek legal guidance.  You and your child have the right to quality healthcare that meets the standards of the medical practice, and the law.  When these standards are not met, your legal rights may have been violated and your child may have been injured as a result.  This is never acceptable.

At Brown & Brothers, our team of medical malpractice attorneys has successfully litigated numerous cases involving birth injuries, medical malpractice, and medical negligence.  Let us help you protect your rights and find options that will help your family move forward after a devastating, needless injury.