KANSAS CITY, Mo. -- A boy who's disabled has been in intensive care for more than a month. His mother and doctor say his disability and recent trouble could have been prevented if a simple jaundice screening had been done soon after he was born.
Muscle spasms wrack Eryith Majeed-Glass's body. It's one reason why the five-year-old has been in intensive care at Children's Mercy Hospital since early January. The painful spasms can continue for up to three days at a time.
"If you can imagine having charlie horses literally from head to toe," said his mother, Akiba Majeed-Glass.
Eryith has no control of his muscles. He's never been able to walk, talk or sit up. His thinking is unaffected.
"In essence, Eryith is trapped inside his body," said his mother.
She says the trouble started within days after birth. Eryith became very lethargic and had a high-pitched cry. It took four-and-a-half years for the family to learn his rare condition had a name, kernicterus.
Dr. Steve Shapiro, an expert on kernicterus, made the diagnosis after he joined the staff at Children's Mercy.
"To learn at the same time that it was something that was completely preventable that was caused by jaundice, that was devastating," said Majeed-Glass.
Eryith had jaundice as a newborn, but Majeed-Glass says their doctor did not order a bilirubin test that would have revealed high levels. He wasn't treated with light therapy. Jaundice caused the damage to his brain.
"The only really good way to know who's at risk is to measure the bilirubin in the body or the blood," said Dr. Shapiro.
The neurologist says the testing of newborns is done routinely in Kansas City hospitals, but not everywhere.
"I completely support universal bilirubin screening of all newborns," said Dr. Shapiro.
Majeed-Glass takes it a step further, saying it should be mandated by law.
"Kernicterus is still happening, and it's 100 percent preventable," said the mother.
She says no other child should be disabled for life because a simple, inexpensive test wasn't done. She adds that if screening shows your baby's bilirubin level is high, make sure there's a treatment plan and take jaundice seriously.
Dr. Shapiro says even with screening, kernicterus occurs in about 1 in 100,000 births. The U.S. Preventive Services Task Force has not made a recommendation for screening all newborns, saying that evidence is lacking.