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Was Your Baby Diagnosed with Kernicterus? Top 8 Questions to Ask Your Doctor

May 17, 2018

If your newborn baby has been diagnosed with kernicterus, the news is devastating, and you are likely searching for answers as to how and why the condition occurred, whether it could have been prevented, and what the future holds for your child.

Below are answers to the eight most common questions asked by parents after their child is diagnosed with kernicterus.

What Is Kernicterus?

Kernicterus is a rare but serious disease that occurs when severe jaundice in a newborn infant goes undiagnosed and untreated. It is a preventable injury that can cause severe brain damage and ultimately result in long-term disability and even death. If newborn jaundice is timely diagnosed and treated, kernicterus can absolutely be prevented.

Jaundice develops early in a newborn’s life when the baby has too much of a pigment formed in the liver, called bilirubin, in its blood, a condition known as hyperbilirubinemia. Some elevation of bilirubin is extremely common and is usually benign and self-resolves. But when bilirubin levels become too high, the infant requires phototherapy treatment under bili lights to help it get rid of the excess bilirubin. In severe cases, the infant may require an exchange blood transfusion.

Jaundice is treatable in almost all cases. However, because it often manifests after babies are discharged from the hospital, babies with excessive bilirubin levels can go undiagnosed and untreated and their jaundice may become kernicterus.

This was not always the case. By the 1970s kernicterus had largely been eradicated. It returned in the 1990s when the practice began of discharging moms and infants from the hospital 24 to 48 hours after birth. That resulted in infants not receiving medical follow-up during the critical 3 to 5 days of life when jaundice most commonly manifests.

When a newborn leaves the hospital, medical follow-up during the first 3 to 5 days of life is essential to diagnose and treat jaundice to prevent it from becoming kernicterus.

Medical follow-up for newborns diagnosed with jaundice includes:

  • Examination by a pediatrician
  • Bringing the baby back to the hospital for testing
  • Home visits by a medical professional, such as a nurse

How Does Too Much Bilirubin Lead to Jaundice?

Bilirubin is a yellow substance produced in the liver from the normal breakdown of red blood cells in a process called hemolysis. Bilirubin is then excreted in bile and urine. When an infant is still in the uterus, the mother’s liver takes care of this process for the fetus. Once a baby is born, it is supposed to take up the process on its own. Sometimes, however, a newborn’s liver has not developed fully, and cannot remove enough bilirubin from the liver which then enters the baby’s bloodstream. An excess of bilirubin in the blood is referred to as hyperbilirubinemia. The extra bilirubin then travels to all parts of the body through the bloodstream, causing the infant’s skin to turn yellow. Jaundice is the medical term for this yellow skin. If the excess bilirubinemia gets into the baby’s brain it can “stain” the brain, thereby causing brain damage known as kernicterus.

How Common Is Kernicterus?

The Centers for Disease Control and Prevention (CDC) reports that 60% of infants have neonatal jaundice. Of that 60%, a tiny number of babies who are left untreated develop kernicterus. While the exact incidence of kernicterus in the United States is unknown, a pilot kernicterus registry monitoring the cases of babies with kernicterus in the United States who have been voluntarily reported shows 125 babies with kernicterus enrolled from 1984-2002.

What Are the Symptoms and Warnings of Kernicterus?

The most common sign that a newborn is at risk for kernicterus is yellowing of the skin (jaundice), especially in the first 24 hours after birth. Sometimes, the whites of the infant’s eyes may turn yellow too.

Other symptoms of Kernicterus include:

  • Lethargy (the baby is not alert, difficult to wake up or can’t be kept awake)
  • Shrill, high-pitched cry
  • Weak, limp or floppy appearance
  • Tendency to lie unnaturally in bed, with body arching or bowing upward when lying on back

It is important to note that jaundice does not always lead to kernicterus. Many babies have jaundice when they are a few days old, but with proper treatment, it almost always goes away without any long-term effects. Early diagnosis and treatment is the key to avoiding brain damage.

Can Jaundice Be Treated So That Kernicterus Will Not Develop?

Absolutely. Many times, jaundice will go away without treatment. However, if treatment is required, the main treatment is a simple one. Babies are placed under special blue lights, called “bili lights,” for a number of hours, or wrapped in a “bili-blanket.” This treatment is called phototherapy. It helps remove the bilirubin from the blood, which avoids the development of kernicterus. The blue lights are warm and do not cause any risk or harm to the baby. If the baby becomes severely jaundiced, doctors can also perform a blood transfusion to remove the extra bilirubin, referred to as an “exchange transfusion.”

No baby should develop brain damage from untreated jaundice. Medical experts now refer to kernicterus as a “never event,” because it is an entirely preventable tragic disease.

What Are the Risk Factors for Jaundice and Kernicterus?

Some newborn babies are more likely than others to develop jaundice, which if left undiagnosed and untreated can lead to kernicterus.

Newborns at increased risk for jaundice include:

  • Babies who suffered a head bruise (cephalohematoma) during childbirth
  • Babies who are born early (prematurely)
  • Babies who are not nursing well
  • Babies who have a brother or sister who had jaundice
  • Babies born to an African-American, East Asian or Mediterranean family in whom G6PD (Glucose-6-Phosphate Dehydrogenase) deficiency is common

How Is Kernicterus Diagnosed?

If an infant shows signs of neonatal jaundice, hyperbilirubinemia or other related symptoms as mentioned above, a doctor should be made aware immediately. The timing of the appearance of jaundice can help with the diagnosis. Jaundice that appears within the first 24 hours after birth is serious and requires immediate treatment.

Tests like the Bhutani nomogram may be used to determine how much bilirubin is present in an infant’s system. A doctor or nurse may check the baby’s bilirubin using a light meter that is placed on the baby’s head. This results in a transcutaneous bilirubin (TcB) level. If it is high, a blood test will likely be ordered.

According to the Centers for Disease Control and Prevention (CDC), the best way to accurately measure bilirubin is with a small blood sample from the baby’s heel. This results in a total serum bilirubin (TSB) level. If the level is high, based upon the baby’s age in hours and other risk factors, treatment will likely follow. Repeat blood samples will also likely be taken to ensure that the TSB decreases with the prescribed treatment.

Bilirubin levels are usually the highest when the baby is 3 to 5 days old. At a minimum, babies should be checked for jaundice every 8 to 12 hours in the first 48 hours of life and again before 5 days of age.

What Happens If My Child Is Diagnosed with Kernicterus?

Although the specific effects of kernicterus may vary, the brain damage caused by kernicterus is permanent, and therefore often results in lifelong disability requiring significant care, treatment and financial resources. If your baby has kernicterus, you may have a medical malpractice claim against healthcare providers whose negligence caused this brain injury. The malpractice claim is for the harm your child has suffered, and for the cost of care and treatment for your child.

The Birth and Neonatal injury lawyers at Feldman Shepherd Wohlgelernter Tanner Weinstock & Dodig LLP have successfully settled many medical malpractice claims for children with kernicterus. The lawsuits filed on behalf of kernicterus patients and families seek damages for medical bills, loss of earning potential, pain and suffering, and loss of the pleasures of life.

Some of the verdicts and settlements achieved by Feldman Shepherd Birth and Neonatal Injury attorneys include:

$20 Million Settlement of Central Pennsylvania Cerebral Palsy Case

$12 Million Settlement of Neonatal Malpractice Case

$10 Million Settlement of California Kernicterus/Cerebral Palsy Case

$8.5 Million Settlement of Albany, New York Kernicterus/Cerebral Palsy Case

$5 Million Recovery for Brain-Damaged Child for Failure to Diagnose Jaundice


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