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DHS news release

July 1, 2004

Contact: Bonnie Widerburg (503) 731-4180
Technical contacts: Michael Skeels, DHS (503) 229-5882
Joanne Rogovoy, March of Dimes (503) 222-9434

National report: Oregon's newborn screening program scores high

Oregon's newborn screening program receives high marks in a new March of Dimes report, according to public health officials in the Oregon Department of Human Services (DHS).

The report was released as part of week-long NBC special on the topic of newborn screening, airing nationally on the Today show.

"The March of Dimes is the first national health organization to recommend that every baby born in the United States receives, at a minimum, screening for a core group of nine metabolic disorders," said Joanne Rogovoy, program services direction at the March of Dimes, Greater Oregon Chapter. "These nine disorders can be successfully managed or treated to prevent severe consequences, if diagnosed early."

"Oregon is among only 21 states that offer core newborn screening tests as recommended by the March of Dimes," said Michael Skeels, Ph.D., director of the state public health laboratory in DHS. "A big factor in our rating was the recent addition of MCAD screening, which tests for a disorder of body chemistry that can be fatal if undetected and untreated."

Skeels said that 29 states test for MCAD and five of those, including Oregon, are part of the Northwest Regional Newborn Screening Program whose tests are performed by the Oregon lab. In 2001 the Legislature approved adding MCAD, along with 19 other disorders, to the list of six disorders for which Oregon babies were already being screened.

"We're proud of the critical role we play in detecting disorders, which results in saving a newborn from serious illness or death," Skeels said. "But that's only half of the story. Just as critical as detection is the medical consultation, clinical intervention and follow-up with parents after a positive screen is identified."

Skeels said Oregon Health and Science University (OHSU) does initial follow-up of infants diagnosed through newborn screening, and links up with the infant's local doctor to make sure treatment is provided. Because these disorders are rare, expert assistance in managing of the baby's condition through childhood is critical, he said.

In 1962 Oregon became the first state in the country to implement statewide newborn screening. "It's been a real success story, allowing hundreds of children to grow up healthy," Skeels said. "It's also created a strong partnership between the state laboratory, practitioners, and medical experts at OHSU."

The screening itself is performed when the infant is only a few days old. Small drops of the baby's blood are collected on special filter paper, which is sent to the state lab in Portland where tests are done.

The lab tests the blood for phenylketonuria (PKU), Maple Syrup Urine Disease, sickle cell disease, hypothyroidism, galactosemia, biotinidase deficiency, hypothyroidism, congenital adrenal hyperplasia (CAH), and several urea cycle, amino, organic, and fatty acid disorders (including MCAD). During the past 18 months these disorders have been detected, and disease prevented, in 72 Oregon newborns, Skeels said.

The March of Dimes also recommends that newborns be tested for hearing loss. In 2000, the Oregon legislature passed a bill requiring all hospitals with more than 200 births per year to screen babies for hearing loss.

Twenty-four other states require newborn hearing screening. Oregon's program is overseen by DHS.

Information is available on the DHS Web site about newborn screening and newborn hearing.