Kernicterus is a rare but serious disease that affects babies soon after they are born. It is especially tragic because it is so easily prevented. The first indication of the disease is the yellowing of a baby’s skin, called jaundice, which is caused by an excess of bilirubin in a baby’s system. If jaundice is treated, kernicterus can be prevented. Kernicterus only develops if jaundice and bilirubin toxicity are left untreated.
Bilirubin is a yellow chemical produced in the blood from the normal breakdown of red blood cells. It travels to the liver, where it is then removed from the blood naturally. Sometimes, however, the liver cannot carry out this process fast enough, leaving bilirubin to keep increasing within a baby’s system. As it travels throughout the body via the bloodstream, the child’s skin begins to turn yellow. This condition is called hyperbilirubinemia and it is exceptionally dangerous. According to Virginia Commonwealth University, almost 60% of newborn babies experience jaundice, but only a very small fraction of these cases are allowed to worsen to hyperbilirubinemia.
As bilirubin reaches the brain, the condition worsens even further and is then known as kernicterus. It can often cause severe brain damage that can result in the child’s death. If the baby lives, he or she may experience serious deficits such as cerebral palsy, mental retardation, and/or problems with vision and hearing.
The most common sign that a baby is at risk for kernicterus is yellowing of the skin, especially in the first 24 hours after birth. Sometimes, the whites of the baby’s eyes may turn yellow, too. Other signs are extreme lethargy: the baby is not alert, difficult to wake up, or can’t be kept awake. It is also important to regularly monitor their diapers, as they may have abnormal bladder and bowel functioning. Babies with kernicterus may have a shrill, high-pitched cry and may appear weak, limp, or floppy. A very late sign is if the baby lies unnaturally in bed with his or her body arching or bowing upward when lying on their backs.
Another concern about kernicterus is its misdiagnosis. The brain damage caused by this disorder can mimic some of the movement and language processing problems like autism spectrum disorders, mental retardation, and cerebral palsy, thereby resulting in a failure to identify kernicterus as the cause of a child’s symptoms.
It is worth remembering, though, that jaundice and kernicterus are not the same thing. In only a few cases does jaundice develop so aggressively that it becomes hyperbilirubinemia or kernicterus. Very often jaundice will go away without treatment. However, if treatment is required, the main solution is a simple one: babies are placed under special blue lights for a number of hours or wrapped in a “bili-blanket.” This is called phototherapy. It helps remove the bilirubin from the blood that can cause kernicterus.
Children who develop kernicterus as a result of excessive jaundice are very likely victims of medical malpractice. There is virtually no way for a baby to suffer from this disorder if they are being cared for adequately. While some children who have kernicterus can ultimately do well, others will have severe problems that will require a lifetime of care.