The Kernicterus Program at Children's Mercy provides a full range of diagnostic services, treatment options, and support services for patients diagnosed with kernicterus.
Kernicterus is a form of brain damage caused by excessive jaundice. The substance which causes jaundice, bilirubin, is so high that it can move out of the blood into brain tissue. About 60 percent of newborn infants in the United States are jaundiced. Jaundice is the yellow coloring of the skin and other tissues. It can often be seen well in the sclera, the "whites" of the eyes, which look yellow. Children with kernicterus have a dystonic or athetoid form of cerebral palsy.
How Kernicterus Affects the Body
Kernicterus, jaundice of the brain, involves a specific part of the basal ganglia, the globus pallidus. It also includes lesions of brainstem nuclei in auditory (hearing), oculomotor (eye movement), vestibular (balance) systems and the cerebellum (coordination). Abnormalities of the globus pallidus can be seen on MRI scan of infants with kernicterus.
Clinically, classic kernicterus involves: 1) specific movement disorders, 2) hearing loss or deafness, 3) impairment of eye movements especially upward gaze, and 4) abnormal staining of the enamel of baby teeth. Children with kernicterus have a "dystonic" or "athetoid" form of cerebral palsy. An "athetoid" form of cerebral palsy is classic and refers to the slow, writhing involuntary movements that occur. Dystonia, or abnormal muscle tone and position, is more common, and may occur with or without athetosis.
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Treatment for Kernicterus
Our experienced team provides full support and treatment options for children diagnosed with kernicterus. The clinic offers pharmacological and non-pharmacological treatments. Families also benefit from a collaborative approach to care which includes specialists from several clinical departments. The treatment process includes a thorough diagnostic test, genetic analysis, advanced imaging studies, phototherapy (treatment with light) pharmacological treatments, and comprehensive support services.
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Helpful Information for Parents
When bilirubin is very high, there are several things parents need to watch for.
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When babies are affected by excessive jaundice and begin to experience brain damage, there are several common symptoms to look for. Symptoms include:
- Becoming lethargic and difficult to wake up
- Having a high-pitched cry
- Frequent arching of the head and back
- Decreased muscle tone, becoming hypotonic or floppy, with episodes of increased muscle tone (hypertonic)
- As the damage continues, they may develop fever, may arch their heads back into a very contorted position known as opisthotonus or retrocollis