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An alert released to US hospitals urges them to monitor newborns for a rare but preventable disorder which leads to brain damage.

The condition, called kernicterus, is estimated to strike only one in 100,000 babies, or perhaps as few as one in 1 million. But experts say that since US hospitals are increasingly discharging newborns within a day or two of birth, doctors may miss the early warning signs of kernicterus.

Since the rare disorder may fall under the radar of many health professionals, the JCAHO or Joint Commission on Accreditation of Healthcare Organizations is issuing a nationwide alert to urge them to follow kernicterus-prevention guidelines already in place. The commission, which monitors and accredits healthcare organizations, is also telling hospitals it will begin questioning them on kernicterus management as part of its quality evaluations.

“Our goal is to keep babies safe from preventable conditions,” Dr. Paul Schyve, JCAHO senior vice president, said in a telephone news conference.

The early sign of kernicterus is severe jaundice, or yellowing of the skin. In children and adults, jaundiced skin signals liver disease, but temporary jaundice is common and usually benign among newborns, affecting up to 70% of infants.

However, in some cases the substance that causes jaundice — called bilirubin — can build up to dangerous levels in the blood. Untreated, this accumulation can lead to kernicterus and, in the long run, developmental conditions such as cerebral palsy and mental retardation.

Currently, experts recommend that hospitals evaluate all newborns who develop jaundice within 24 hours of birth, and that doctors see all infants within 2 days of hospital discharge. They also call on health professionals to teach parents about jaundice.

“Now that babies leave the hospital within a day or two of birth, they may not look jaundiced until they’re home,” Dr. Jeffrey Maisels.

Yet, while Maisels said that hospitals, doctors and parents need to be aware of kernicterus, he also stressed they should keep the risk in perspective.

“I believe it would be a disservice to parents and infants if we created a phobia about jaundice,” Maisels said.

According to the JCAHO, a combination of factors put newborns at risk for excessive bilirubin levels–and, potentially, kernicterus. These include jaundice within 24 hours of birth, prematurity and inadequate nutrition. Black babies and those of Asian or Mediterranean descent also appear to face a higher risk.

According to Schyve, the JCAHO decided to issue its alert after hearing the story of Sue Sheridan, the co-founder of an advocacy group called Parents of Infants and Children with Kernicterus. Her son didn’t get a bilirubin test before he left the hospital as a newborn. Now, at age 6, he is in a wheelchair and suffers from a number of disabilities.

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