Jaundice Screening Could Have Prevented Child’s Brain Damage

A mother of a five-year-old boy with a rare condition known as kernicterus says that her son’s disability could have been prevented with a simple infant jaundice screening shortly after birth.

The child spent the month of January hospitalized with painful muscle spasms, like “having charlie horses literally from head to toe,” as his mother describes them. He has never learned to walk, talk, or sit up on his own. His intellectual abilities are intact, however, leaving him with a sound mind trapped inside his body.

Only when the boy was four and a half years old did his mother discover a diagnosis for her son’s condition: kernicterus. She also learned that the condition would likely have been preventable through a simple screening of her son’s bilirubin levels shortly after birth.

Infant jaundice screening and treatment available

Jaundice occurs when bilirubin levels build up in a baby’s blood. While in the uterus, bilirubin is removed by the mother’s liver; however, a newborn baby’s own liver may not be fully developed enough immediately after birth to process bilirubin. 60% of all newborns have some form of jaundice, though some experience more severe cases than others. The most obvious signs of jaundice are yellowing skin and a yellowing of the whites of the eyes.

Screening is often done frequently in the first few days of life to make sure that bilirubin levels do not build up too much. Bilirubin levels can be highest when a baby is 3-5 days old, often when babies have already come home from the hospital.

Warning signs to look for include: very yellow or orange skin, extreme sleeping difficulties, eating difficulties, fussiness, or insufficient wet or dirty diapers. Babies with these signs should be seen by a doctor on the same day. Babies who are crying without respite or in a high pitched squeal, who arch their backs, have stiff or floppy body posture, or who have a strange pattern of eye movements should be seen immediately.

The mother reports that her son had a high pitched cry and was extremely lethargic just days after he was born. Babies whose bilirubin levels are found to be too high are treated with light therapy in order to prevent kernicterus. However, the child’s bilirubin levels were never tested and, consequently, he did not receive treatment for jaundice and ended up suffering brain damage that left his body in its current compromised state.

Kernicterus caused by extreme jaundice

Dr. Steve Shapiro diagnosed the child with kernicterus when he was hospitalized at Children’s Mercy Hospital in Kansas City. He notes that most hospitals in Kansas City, MO screen for high bilirubin levels routinely. However, the practice is not universal and no such testing was done on the child. Dr. Shapiro stated “I completely support universal bilirubin screening of all newborns.”

The mother says she found it “devastating” to learn that her son’s condition was completely preventable through a simple and inexpensive test. “Kernicterus is still happening, and it’s 100 percent preventable,” she said, arguing that bilirubin testing for infants should be mandated by law.

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