Understanding Kernicterus and Its Effect on Newborns

Kernicterus is a rare form of brain injury that can develop when severe newborn jaundice goes untreated. This page is here to help your family understand the diagnosis, what may have led to it, and the options that may be available to you.

What is kernicterus?

Kernicterus is a type of brain injury caused by very high levels of bilirubin in a newborn’s blood. Bilirubin is a yellow substance the body produces as it breaks down old red blood cells, and a healthy liver normally clears it away. In the first days of life, many babies have mild jaundice, a yellowing of the skin and eyes, because a newborn’s liver is still maturing. This mild jaundice is common and usually resolves on its own.

Problems arise when bilirubin climbs to dangerous levels, a condition doctors call hyperbilirubinemia. At those levels, bilirubin can cross into the brain and settle in areas that control movement, hearing, and eye control. Kernicterus is the term for the lasting damage that can result.

Signs and symptoms of kernicterus

Doctors often describe bilirubin’s effect on the brain in two broad stages: an acute phase during the newborn period, and a chronic phase that becomes clearer as a child grows. In the earliest days, the signs a family or care team may notice include:

• Deep yellowing of the skin and the whites of the eyes, sometimes within the first 24 hours of life
• Unusual sleepiness or difficulty waking, along with poor feeding
• A high-pitched cry
• Low, “floppy” muscle tone that may later shift toward stiffness
• Arching of the neck and back
• Fever or irritability, and in severe cases, seizures

Longer-term effects tend to appear later and are described in more detail in the stages section below. Because early jaundice can look mild even when bilirubin is rising, close monitoring in the first days of life is important.

What causes kernicterus?

Kernicterus is almost always the result of severe jaundice that was not identified or treated in time. Several factors can push a newborn’s bilirubin to dangerous levels or make the brain more vulnerable to it:

• Blood type incompatibility between parent and baby, such as Rh or ABO incompatibility, which speeds the breakdown of red blood cells
• Inherited red blood cell conditions, such as G6PD deficiency
• Premature birth, since a preterm baby’s liver is less able to clear bilirubin
• Bruising during delivery, or a cephalohematoma, which is a collection of blood under the scalp
• Infection, such as sepsis
• Feeding difficulties or dehydration that slow the removal of bilirubin from the body

Many of these risk factors are well known to medical providers, which is one reason newborns are routinely screened for jaundice before and after leaving the hospital.

When kernicterus may be a sign of medical malpractice

Not every case of kernicterus is the result of medical negligence. Some newborns face risk factors that are difficult to anticipate, and jaundice can sometimes progress quickly. At the same time, kernicterus is widely considered preventable when jaundice is monitored and treated according to accepted standards of care. When those steps are missed, a family may have reason to ask whether the injury could have been avoided.

The following situations may point to negligence:

• Failing to check a newborn’s bilirubin level despite visible jaundice or known risk factors
• Not using established screening tools, such as plotting bilirubin on an hour-specific nomogram
• Discharging a newborn without appropriate jaundice follow-up or clear instructions for parents
• Delaying or failing to begin phototherapy when bilirubin levels called for it
• Failing to move to an exchange transfusion when phototherapy alone was not enough
• Not recognizing or acting on the signs of a baby in distress

Determining whether any of this happened in a particular case takes a careful review of the medical records. Wais, Vogelstein, Forman, Koch & Norman, LLC works with medical experts to examine the care a mother and baby received and to help families understand whether it met the standards they had a right to expect.

Treatment and long-term outlook

When jaundice is caught early, treatment is often straightforward and effective. Phototherapy, which uses special lights to help the body break down bilirubin, is the most common approach. In more serious cases, doctors may perform an exchange transfusion, which replaces some of the baby’s blood to lower bilirubin quickly. When treatment happens in time, brain injury can be prevented altogether.

If kernicterus has already caused damage, the injury itself cannot be reversed, but supportive care can make a meaningful difference in a child’s development and daily life. Depending on a child’s needs, care may include physical therapy, occupational therapy, speech therapy, hearing support, and early intervention or special education services. Every child is different, and outcomes vary widely.