Before newborn infants leave Trinity Hospital in Minot, they are screened for 29 different disorders in addition to receiving a hearing test.
Statewide, almost 100 percent of infants are screened before they exit the hospital. The disorders that are screened for can complicate an infant's development if they aren't treated promptly.
"The advantage of screening is that all of the conditions that we screen for are treatable. With early screening and treatment, your chances for a normal outcome are much improved," Dr. Thomas Carver, pediatrics/neonatology for Trinity Health of Minot, said.
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Katina Tengesdal/MDN - - Dr. Thomas Carver, pediatrics/neonatology for Trinity Health of Minot, looks over a list of newborn screening tests.
Carver explained the many advantages of screening for disorders by using the example of a condition called phenylketonuria, or PKU. Individuals affected by PKU are unable to properly process the essential amino acid phenylalanine, which then accumulates in their system and damages their brain.
"Back in the '40s and '50s, there were hundreds to thousands of individuals in institutions for developmental disabilities because of PKU," Carver said. "Once we were able to test for it, and get those individuals on special diets right away, they would grow up normally."
Since 2007, North Dakota has screened newborns for 29 different disorders. In guidelines from the American College of Medical Genetists, 21 of those conditions should be screened for by all states, and eight of those conditions are currently being tracked for data.
"There are 42 states that do all of the 21 recommended tests. North Dakota does all of those 21, plus eight more. We're very close to getting 100 percent of newborns screened before discharge. Most hospitals in the state have policies in place to screen before the infant is 24 hours old," Carver said.
Expansion
The list of screening tests has expanded rapidly, as more treatment options became available for the conditions. Carver said that initially, the only newborn screening test that was done was for PKU, with congenital hypothyroidism being added a bit later.
"Five years ago, North Dakota was testing for eight disorders. The list was steadily increased up until two years ago, when we went to the expanded screening," Carver said.
"Before all the testing, parents would find out about a child's disorder when the child failed to grow normally, or the child failed to reach developmental milestones," he added.
Screening tests are sent to a laboratory in Iowa, and abnormal results are reported. Follow up testing will determine if the result was a false positive or if treatment is necessary.
"There are false positives. We do panic a few parents with that," Carver said. "But, for those parents who have a child affected, it's worth it. Those parents with a child affected can get the child on treatments right away, and the child can grow up normally."
The conditions that are screened for are relatively rare -- ranging from affecting one in every 5,000 children to one in every 100,000 children.
"I have seen a few of these conditions in the last couple of years," Carver said. "Individually, the conditions are rare, but if you look at them as a group, they're more common."