The North Dakota Department of Health and the Center for Social Research (CSR) at North Dakota State University (NDSU) continue their collaboration of working together in a new project that focuses on gathering information from mothers who have lost a baby to stillbirth to improve future outcomes. Kendra Erickson-Dockter is a research specialist with the CSR and provides substantial support to the North Dakota Study of Associated Risks of Stillbirth (SOARS) project. Kendra received her master’s degree in Sociology and is a doctoral student in Human Development at NDSU. Chelsey Hukriede is a research specialist at the CSR and serves as the Project Coordinator for two statewide surveillance projects, North Dakota Pregnancy Risk Assessment Monitoring System (PRAMS) and SOARS. Chelsey earned her master’s degree in Sociology from the University of North Dakota. Grace Njau is the Director of Special Projects at the North Dakota Department of Health and serves as the Principal Investigator of North Dakota SOARS. Grace received her master’s degree at the University of Colorado and is a doctoral candidate at the University of Tennessee.
October is Pregnancy and Infant Loss Awareness Month. In this article, the authors present a new study that will contribute to the research, education and prevention efforts which may ultimately reduce the incidence of these tragedies.
Most pregnancies end with a healthy baby to take home; however, there are also pregnancies that end in the loss of a baby, whether through miscarriage or stillbirth. Both miscarriage and stillbirth are considered a pregnancy loss but are differentiated based on the gestational age of the baby. Typically, a miscarriage is defined as loss of a baby before the 20th week of pregnancy, and a stillbirth is loss of a baby after 20 weeks of pregnancy. A stillbirth refers to the death of a baby before or during delivery (Centers for Disease Control and Prevention).
According to the Centers for Disease Control and Prevention (CDC), stillbirth affects about 1 in 160 births (6.25 per 1000 births), and each year about 24,000 babies are stillborn in the United States. That is about the same number of babies that die during the first year of life and it is more than 10 times as many deaths as the number that occur from Sudden Infant Death Syndrome (SIDS). Specifically, in North Dakota overall, the stillbirth rate is 6 per 1000 live births. In 2018, stillbirth numbers in North Dakota surpassed the number of infant mortality (babies that die in the first year of life) cases (60 compared to 54 cases, respectively). Additionally, minority women are disproportionately affected by stillbirths. For instance, the stillborn rate per 1000 live births is 5.11 for white women, compared to 9.15 for American Indian women and 6.71 for women of other races.
Unfortunately, the loss of a baby due to stillbirth continues to be a heartbreaking reality for many families and takes a significant toll on families’ health and well-being, in the United States and in North Dakota communities as well. To gain knowledge about the potential causes of stillbirth, the North Dakota Department of Health and the North Dakota Department of Human Services are sponsoring a public health surveillance project. The information collected can be used to develop recommendations, policies, and services to help prevent stillbirth and provide support for families. The surveillance project is called the Study of Associated Risks of Stillbirth (SOARS) and will be implemented by the North Dakota State University Center for Social Research. North Dakota is among a few states that is implementing SOARS, which will add to and fill the gap related to information from women who have a pregnancy that results in the loss of a baby (stillbirth).
This is not the first collaboration for the Center for Social Research and the North Dakota Department of Health. These entities have a long history of working together to improve the health of North Dakotans. Currently, the North Dakota Department of Health, the Centers for Disease Control and Prevention, and Center for Social Research are collaboratively conducting the Pregnancy Risk Assessment Monitoring System (PRAMS). PRAMS was initiated with the overall goal of reducing infant morbidity and mortality. It is the only surveillance system that provides data about pregnancy and the infants’ first few months after birth. PRAMS is especially useful in identifying women and infants at high risk for health problems, for monitoring changes in health status, and in measuring progress toward goals for improving the health of mothers and infants. The new SOARS project uses the experience and expertise in conducting PRAMS to get this new information to improve outcomes.
SOARS is an on-going, state-specific, population-based survey which has been designed to collect data on maternal behaviors and experiences, prior to, during, and immediately following pregnancy among mothers who have recently experienced a stillbirth. Stillbirth, for the purposes of this project, is defined as the in-utero death of a baby at 20 weeks of pregnancy or later. North Dakota SOARS initiated in 2020 to help health officials learn more about why stillbirths occur. The understanding of potential causes of stillbirth will lead to recommendations, policies and services to help prevent them in the future.
SOARS is important because it will provide data that is not available in medical records or on fetal death certificates. The information learned from these surveys will assist in identifying women who are high risk for stillbirth, monitor risk factors, and identify potential areas for prevention. This project will also assist in monitoring progress towards goals in reducing the rates of stillbirth in North Dakota.
The survey was designed using lessons learned and information shared from Utah SOARS (the first SOARS project in the U.S.). Survey topics were also developed using literature review, stillbirth experiences, and the PRAMS surveillance project, in addition to input from an Advisory Committee. The Advisory Committee is made up of individuals from a variety of organizations and specialties: Maternal and Fetal Medicine, North Dakota Department of Health, North Dakota Legislature, North Dakota Office of the Tax Commissioner, North Dakota State University, Perinatal Behavioral Health, and Vital Records.
The survey questionnaire consists of questions that are specific to North Dakota’s data needs. The survey covers the following topics and more:
The survey was also designed to collect information on emerging issues (e.g., COVID-19), special projects (e.g., Count the Kicks), and North Dakota specific topics (e.g., Stillborn Tax Credit).
The SOARS survey launched mid-September 2020. To implement the SOARS survey in North Dakota, each month, the addresses for all North Dakota women who experienced a stillbirth in the previous two to four months will be obtained from vital records and fetal death certificate data. The Center for Social Research will send each of these women an introductory letter that includes condolences, information about the ND SOARS project, and asking for their future participation. Following the introductory letter, a survey packet is sent to each woman. The survey packet includes: the paper survey booklet, a letter detailing the project and access to an online version of the survey, a unique resource list to available North Dakota programs and resources, and an important information page explaining their informed consent and more details of the ND SOARS project. A small necklace, in remembrance of their baby, is also included in the packet as an incentive for participation and to express condolences for their loss. Two weeks following the first survey, a second survey packet is mailed to each of the women who have not yet responded. A final thank you and reminder letter is sent two weeks after the second survey attempt is mailed. Data collection for each month’s set of addresses will end 66 days after the initial mailing, which is one month after the final reminder letter.
Findings from North Dakota SOARS analyses will be instrumental in developing and implementing new maternal and child health programs and to modify existing programs. Project results will help inform public health policies and assist health professionals in incorporating the latest research findings into their standards of practice. Data from SOARS can enhance understanding of maternal behaviors and experiences and their relationship to stillbirth. This project will also monitor progress towards local, state, and national health objectives and goals.
Barriers are also a consideration when conducting surveillance projects and research. One such barrier has been COVID-19, which has impacted the launching of the project. The initial target implementation of the project was May 1, 2020; however, the pandemic pushed back the launch date and expanded the initial mailing sample. Another consideration is the small size of the population of surveillance project and the potential difficulty that may arise to reach these populations or to obtain completed surveys due to the sensitive nature of the topic. Multiple years of data collection may be needed to form recommendations, policies, or educational information.