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Journal Sentinel Investigation: Delays in Newborn Screenings Can Have Deadly Consequences

"G" jewels g is for Grandma/flickr

It's been routine for years in this country that newborn babies are screened for a variety of diseases and conditions shortly after they're born.

But an investigative series concluding today in the Milwaukee Journal Sentinel learned that the way those screening tests are handled is anything but routine.

The series found delays in the process that have led to serious medical issues and even deaths in some infants from conditions that could have been successfully treated if they'd been caught early.

"The whole way newborn screening works is the state lab does the testing quickly or they are supposed to and then they contact the doctor, so if the child does have one of these genetic disorder, they can be treated quickly," says Ellen Gabler, investigative reporter for the Journal Sentinel and lead reporter for the series.

But that doesn't always happen.

Life and death consequences

Delays in screening results can have serious consequences for the nearly one in 800 children born with a potentially severe or deadly condition that many times can be treated or managed with a proper testing and diagnosis.

In fact, Gabler says the series was inspired by a case in Wisconsin in which a child became extremely ill due to a genetic condition. The child could have been treated easily with a simple diet of sugar water, but newborn screening results had been delayed, hence delaying treatment.

Another Journal Sentinel report tells the story of a child born in Colorado who died the day before his newborn screening results came back. Had the test been done efficiently, the child's condition, in which the child's blood sugar drops suddenly, could have been easily treated with feedings every couple of hours. In contrast, another child with the same condition was just fine, as the results for this baby were done quickly.

What causes delays?

Nina Matthews Photography/Flickr
Babies' feet are pricked for a blood sample to screen for genetic disorders shortly after birth.

Gabler says one of the problems possibly contributing to screening delays is that there are no set standards nationwide for how soon screenings must be sent in to labs. Some states require blood samples to be sent in within 24 hours, others simply have recommendations.

Additionally, many hospitals weren't paying attention to what regulations or recommendations were in place. Reporters found many state public health labs' websites had to urge hospitals to not to "batch" samples, or hold them and send them in groups, but rather get them in quickly.

"They have warnings that say this can lead to irreversible damage or death in infants, and still some hospitals are doing it anyway," Gabler says.

Perhaps the most shocking reason why screening results get delayed is that many labs aren't open on the weekend.

"About half the labs in the country are closed on weekends," Gabler says. "And so that means if a child is born later in the week, their test will not be tested as quickly, and again, a matter of days - a matter of hours, really - can be very crucial."

Some states do well, others have delays

The stories pointed to significant holes in the data that are available, making it difficult to quantify the problem in some states.

"I realized that some of the labs had never even done this analysis," Gabler says. "Many of these labs didn't even know what particular hospitals were a problem and they didn't know how big a problem it was in their own state."

Gabler says based on the data, some states do much better than others in getting screenings into labs. Iowa has an efficient system, Gabler says, while states like Arizona are doing statewide training to remind hospitals of the importance of getting blood samples to labs in a timely manner.

Interestingly, Gabler says at first Wisconsin didn't want to release data on screening delays because it felt it would be "adversarial" to hospitals. There were concerns that the public wouldn't be able to understand that not every late sample "means a child is being harmed."

Wisconsin's record is "pretty good" compared with other states, Gabler says.

"But pretty good in a lot of cases isn't good enough, especially if your child is the one who has a condition and that condition was missed because a test was delayed," she says.

The Journal Sentinel series "Deadly Delays" wraps up in today's edition of the paper.  The other two reporters on the series were Mark Johnson and John Fauber.