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University of Iowa News Release

May 12, 2006

State Birth Defects Surveillance Program To Monitor Fetal Death

Each year, there are more than 200 fetal deaths in the state of Iowa. But three Iowa mothers who shared the devastating experience of losing a stillborn child are determined to spare others from the same emotional pain. Their story is told in the 2006 annual report of the Iowa Registry for Congenital and Inherited Disorders released today.

The three Des Moines area mothers - state Rep. Janet Petersen, Tiffan Yamen and Jan Caruthers - connected with one another and with other women who had recently experienced losing a stillborn child. Working with the Iowa Chapter of the March of Dimes, the Iowa Department of Public Health (IDPH) and a network of families of stillborn infants, the three petitioned Iowa Sen. Tom Harkin on federal funding for stillbirth evaluation and prevention efforts. Harkin secured funding to the Centers for Disease Control and Prevention for pilot projects for stillbirth surveillance in Iowa and metropolitan Atlanta, Ga in federal fiscal years 2006 and 2007.

Stillbirth surveillance in Iowa will be conducted by the Iowa Registry for Congenital and Inherited Disorders, a collaborative program of the University of Iowa College of Public Health and IDPH.

"Through this expanded surveillance program, we hope to support additional research to better understand factors related to fetal death and develop possible prevention approaches," said Paul Romitti, director of the Iowa registry and UI assistant professor of epidemiology. "We also want to learn what parents of stillborn children need to get through their difficult time."

According to the registry, for the years 1998 through 2002, the average rate of occurrence of birth defects in Iowa was 48.2 per 1,000 live births. The registry's active surveillance identified, on average, four out of five infants diagnosed with a reportable birth defect that would have been missed using passive birth monitoring sources such as vital records.

"Identifying the most accurate birth defect rates allows us to implement effective interventions and evaluate need for special health care services," said IDPH Director Mary Mincer Hansen, Ph.D.

Links to the registry's 2006 annual report and reports from previous years are available in the "Publications" section at the registry's Web site, People may also request a copy of the report by calling the registry at 319-335-4107.

For over two decades, the registry has collected information for more than 42,000 children with various birth defects. Registry data has been used to investigate risk factors for cleft lip and palate and the effect of folic acid fortification on spina bifida. It has also been used to determine whether the families of children with muscular dystrophy receive needed resources. The registry is one of eight CDC recognized Centers of Excellence for birth defect surveillance, research and education. 

STORY SOURCE: University of Iowa College of Public Health Office of Communications, 4261 Westlawn, Iowa City, Iowa 52242-2500.

CONTACTS: Dan McMillan, 319-335-6835,; or Bradley McDowell, 319-335-4107 or