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IA’s Stillbirth Registry- The Iowa Stillbirth Surveillance Project

The Iowa Stillbirth Surveillance Project was inspired by four Des Moines-area moms who each lost a daughter to stillbirth in 2003. The group of moms, Rep. Janet Petersen, Jan Caruthers, Tiffan Yamen and Kerry Biondi-Morlan, wanted to do something to ensure other parents wouldn’t have to endure the heartache of losing a baby. In the months following their losses, Janet, Jan, Tiffan and Kerry quickly learned stillbirth is the least studied pregnancy complication.

They started a crusade to get people talking about stillbirth. Their talks resulted in the idea of a Stillbirth Registry. It would serve as a central repository for the collection of consistent stillbirth data, including information about the baby as well as the mother’s health and her pregnancy.

At the time, the reporting and management of stillbirth cases in Iowa was handled differently from doctor to doctor and birthing center to birthing center. The vision of these mothers was to establish a stillbirth surveillance model in Iowa that the nation could follow.

An Idea Becomes Law

Their legislation was introduced in the 2004 Iowa legislative session. It passed the Iowa House and Senate unanimously and was signed into law by the Governor that spring. 

The Iowa Stillbirth Surveillance project was divided into two phases.

Phase 1

In the initial phase, the Iowa Department of Public Health convened a work group of experts to design a standardized fetal death evaluation tool. The makeup of the group ranged from obstetricians, perinatologists and pathologists to grief counselors, insurance company representatives and stillbirth parents.

A Stillbirth Evaluation Manual was created to collect consistent demographic information, patient history/patient interview, pathology/post mortem and provide appropriate follow-up care and grief support. The manuals were disseminated to every birthing hospital in Iowa and to all Iowa physicians who practice obstetrics. The statewide Perinatal Care Team continues to educate medical providers on how to use the manual during their regularly scheduled visits at each birthing hospital.

Phase 2

In 2004, the second phase of the project began with the help of the Centers for Disease Control and Prevention (CDC). The Iowa Stillbirth Surveillance Project was awarded a Cooperative Agreement with the CDC to conduct a pilot project to expand its existing birth defects registry (the Iowa Registry for Congenital and Inherited Disorders) to include surveillance for all fetal deaths in Iowa.

The Iowa Stillbirth Surveillance Project objectives are:

  1.  To evaluate the feasibility of expanding the birth defects surveillance system to incorporate data on all stillbirths.

  2.  To monitor and report on the occurrence of stillbirths in this population.

  3. To serve as a registry for hypotheses-driven etiologic studies on stillbirth.

  4. To serve as a resource for education and evaluation of targeted prevention strategies.

A National Stillbirth Registry

Today, Iowa is leading the nation in stillbirth data collection. Yet, without the help of other states, it will take years to garner the needed data to solve this tragic maternal health issue.

Efforts are underway to build a National Stillbirth Registry. Your voice can help.

Contact us for more information on how you can help us expand the stillbirth registry project.

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