If your newborn has been diagnosed with kernicterus, the news can be devastating. You’re likely searching for answers: how and why the condition occurred, whether it could have been prevented, and what the future holds for your child.
Below are answers to eight of the most common questions parents ask after a kernicterus diagnosis.
What Is Kernicterus?
Kernicterus is a rare but serious condition that occurs when severe jaundice in a newborn goes undiagnosed and untreated. It is a preventable injury that can cause brain damage, long-term disability, or even death. When jaundice is diagnosed and treated promptly, kernicterus can be entirely avoided.
Jaundice develops when a baby has too much bilirubin—a pigment formed in the liver—in the bloodstream. This condition, known as hyperbilirubinemia, is common and usually resolves on its own. However, when bilirubin levels become too high, phototherapy using “bili lights” or, in extreme cases, an exchange blood transfusion may be required.
Because jaundice often appears after discharge, some babies may go undiagnosed and untreated. Prior to the 1970s, kernicterus was largely eradicated. It re-emerged in the 1990s when early hospital discharge practices left newborns without follow-up during the crucial 3 to 5-day window when jaundice typically presents.
Newborns should receive medical follow-up within the first 3 to 5 days after birth to diagnose and treat jaundice before it progresses to kernicterus.
Medical follow-up for newborn jaundice includes:
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How Does Too Much Bilirubin Lead to Jaundice?
Bilirubin is a yellow substance produced by the liver as it breaks down red blood cells. While in the womb, the mother’s liver processes bilirubin for the baby. After birth, the newborn’s liver must take over. Sometimes, an underdeveloped liver fails to remove enough bilirubin, which then enters the bloodstream, causing jaundice (yellowing of the skin and eyes).
If excessive bilirubin reaches the brain, it can cause permanent damage—this condition is known as kernicterus.
How Common Is Kernicterus?
According to the CDC, 60% of infants develop jaundice. Only a small number of untreated cases progress to kernicterus. While the exact rate is unknown, a U.S. pilot registry recorded 125 cases from 1984 to 2002.
What Are the Symptoms and Warnings of Kernicterus?
Early jaundice (within the first 24 hours) is the most common warning sign. The whites of the eyes may also appear yellow.
Additional symptoms of kernicterus include:
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Jaundice does not always lead to kernicterus. With proper treatment, most cases resolve without complications. Early diagnosis is key to preventing brain damage.
Can Jaundice Be Treated to Prevent Kernicterus?
Yes. While mild jaundice often resolves without treatment, higher bilirubin levels are treated with phototherapy—special blue lights or a “bili-blanket.” This therapy helps break down bilirubin so the baby can eliminate it.
In severe cases, an exchange transfusion may be performed. These treatments are safe and effective.
Experts consider kernicterus a “never event” because it is entirely preventable.
What Are the Risk Factors for Jaundice and Kernicterus?
Certain newborns are more likely to develop jaundice that could progress to kernicterus if untreated:
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How Is Kernicterus Diagnosed?
Jaundice within the first 24 hours of life is a red flag and should prompt immediate medical attention. Tools like the Bhutani nomogram assess bilirubin risk based on age and other factors.
A transcutaneous bilirubin (TcB) test uses a light meter on the baby's head. If high levels are detected, a confirmatory blood test is done to measure total serum bilirubin (TSB).
TSB levels are highest between days 3 to 5. Infants should be checked every 8–12 hours for the first 48 hours and once again before day 5.
What Happens If My Child Is Diagnosed with Kernicterus?
Kernicterus causes permanent brain damage and lifelong disabilities that may require extensive care and resources. Families may have grounds for a medical malpractice claim if negligence caused the injury.
The birth injury attorneys at Feldman Shepherd LLP have successfully resolved many such cases. Compensation may include medical costs, lost earning capacity, and pain and suffering.
