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Preventable Infant Brain Damage On the Rise

The threat of kernicterus is returning

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Updated September 07, 2003

A silent attack on the baby’s brain
Here’s the scenario: Your beautiful baby boy is born right on time and receives a clean bill of health from the pediatrician. Your health care insurance only pays for two days in the hospital after the birth, so you and baby go home, with a follow-up doctor’s appointment for when the baby is one week old.

However, after being home for two days you notice your baby is having trouble feeding and seems to be very sleepy. His skin color seems a little odd, too. You call the pediatrician and get an appointment for the next day.

When the pediatrician examines your now five-day-old infant, she sees that the baby is jaundiced. Using a simple test, she discovers his bilirubin level is very high, and admits him to the hospital for treatment with phototherapy. Unfortunately, the damage has been done, and over the next four months your son develops cerebral palsy, mental retardation, and hearing loss.

What kernicterus is
About 60% of newborn babies develop jaundice from a buildup in their bodies of bilirubin, an orange-yellow pigment that results from the natural breakdown of red blood cells. In some babies the level of bilirubin goes so high that it becomes toxic and causes brain damage. This is known as kernicterus.

Symptoms and diagnosis
An infant with very high bilirubin in his body may have severe jaundice (yellowing of his skin), lethargy (excessive sleepiness), and poor feeding. However, jaundice may hard to see in infants with dark skin, and it is difficult to judge how high the bilirubin level is just by looking. There are simple, inexpensive blood and skin tests available to check an infant’s bilirubin level.

If the infant’s condition progresses to kernicterus, he may develop cerebral palsy, uncontrolled involuntary muscle movements (spasticity), mental retardation, hearing loss, and difficulty moving his eyes (gaze paresis).

Treatment
High bilirubin is treated by placing the infant under special lights (called phototherapy). An exchange blood transfusion (infant’s toxic blood is replaced with normal blood) may be necessary. A new drug, Stanate, has been tested which blocks bilirubin production, thus preventing jaundice and kernicterus. The drug is still in development.

Why more cases of kernicterus are appearing
There are several possible reasons why the number of cases of kernicterus seem to be rising:

  • Newborns are often discharged from the hospital before blood levels of bilirubin reach their peak (48-72 hours after birth), but don’t see a pediatrician until a week later
  • Physicians continue to rely only on visual assessment of jaundice, and may fail to recognize very severe cases, or may fail to respond to parents’ concerns about jaundice
  • Newborns who are already jaundiced in the hospital do not have a bilirubin test done before they are discharged home
  • Parents don’t know about the symptoms of jaundice, so they don’t call the pediatrician

Prevention
The best way to manage high bilirubin, though, is to not let it get elevated in the first place. This could be achieved by:

  • Giving a bilirubin test to all newborns before they are discharged home, to catch the ones headed for trouble
  • Provide a follow-up visit with a pediatrician or pediatric nurse within 24 to 48 hours after the infant is discharged home
  • Provide parents with educational materials about jaundice

Information for this article was taken from:
- Centers for Disease Control and Prevention. Kernicterus in full-term infants—United States, 1994-1998. MMWR, 50(23), 491-494.
- Grimm, D. Baby pigment peril. U.S. News & World Report, July 28/August 4, 2003.
- Joint Commission on Accreditation of Healthcare Organizations. Sentinel Event Alert, Issue 18, April 2001.

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