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Infant Mortality and Pregnancy Loss
Knowledge Path

August 2009

Table of Contents

Introduction

Overview

Resources for Professionals

Resources for Families

Resources on Factors That Contribute to Infant Mortality and Pregnancy Loss

Please provide feedback on this knowledge path.

Introduction

This knowledge path about infant mortality and pregnancy loss has been compiled by the Maternal and Child Health Library at Georgetown University. It offers a selection of recent, high-quality resources that analyze data, report on research aimed at identifying causes and promising intervention strategies, and describe risk-reduction efforts as well as bereavement-support programs. Separate sections identify resources on factors that contribute to infant mortality and pregnancy loss: birth defects, injuries, low birthweight and prematurity, and safe sleep environment. This knowledge path for health professionals, policymakers, researchers, and families will be updated periodically.

Related topics: Please see the knowledge paths, Preconception and Pregnancy and Racial and Ethnic Disparities in Health. Also see the Community Services Locator: An Online Directory for Finding Community Services for Children and Families and the resource brief, Home Visiting.

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Overview

See the set of definitions presented by the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center, which describes the terms often associated with infant mortality and pregnancy loss.

Also see the National Center for Health Statistics (NCHS) report, Infant Mortality Statistics from the 2005 Period Linked Birth/Infant Death Data Set (2008), which presents infant mortality rates by race and ethnicity, leading causes of death, infant characteristics such as birthweight, and maternal factors such as receipt of prenatal care. The data brief, Fetal and Perinatal Mortality, United States, 2005 (2009) presents data and examines trends in pregnancy loss.

See the Department of Health and Human Services fact sheet, Preventing Infant Mortality (rev. ed.) (2006), which describes the problem of infant mortality in the United States and federal efforts to reduce mortality risks.

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Resources for Professionals

Web Sites: A-Z

Additional Electronic Publications

Databases

The databases listed below are excellent tools for identifying data, additional literature and research, and programs addressing infant mortality and pregnancy loss. Many of the entries below contain tips on how to use the databases efficiently. Please note that databases vary in how terms should be entered; for example, some require quotation marks and others don't. Enter search phrases as shown in bold below.

Data
  • Community Health Status Indicators (CHSI). Presents county-specific data on health status indicators obtained from a variety of federal agencies including the Department of Health and Human Services, the Environmental Protection Agency, the Census Bureau, and the Department of Labor. Use the indicators to compare a county with counties similar in population composition and selected demographics and to characterize the overall health of a county and its citizens to support health planning. Select a state and county and click on Display Data. Select Measures of Birth and Death to view birth measures and infant mortality rates. CHSI is a service of the Department of Health and Human Services (DHHS).

  • Data2010: The Healthy People 2010 Database. Contains the most recent monitoring data for tracking Healthy People 2010. To obtain data about infant mortality and contributing factors, click on the field, Data by Focus Area. Under the field, Select a Focus Area, choose 16 - Maternal, Infant, and Child Health from the pop-up menu. Next, click on the button for Include Related Objectives From Other Focus Areas in the Table. Click on the Submit button. This data set is provided by the National Center for Health Statistics (NCHS) via CDC Wonder.

  • Health Data Interactive. Presents interactive online data tables on pregnancy and birth, health conditions and risk factors, health care access and use, and mortality. Infant, neonatal, and postneonatal mortality data and data about preterm birth and low birthweight are presented. HDI is a service of the National Center for Health Statistics (NCHS).

  • KIDS COUNT Data Center. Contains information about this national and state-by-state effort to track the status of children in the United States. Generate custom graphs, maps, ranked lists, and state-by-state profiles of birth outcomes, among other child health indicators. KIDS COUNT is a project of the Annie E. Casey Foundation (AECF).

  • Linked Birth/Infant Death Data Set. Contains data about infant births/deaths occurring within the United States to U.S. residents. Data are available by county of mother's residence, infant's age, underlying cause of death, gender, birthweight, birth plurality, birth order, gestational age at birth, period of prenatal care, maternal race and ethnicity, maternal age, maternal education, and marital status. This data set is provided by the National Center for Health Statistics (NCHS) via CDC Wonder.

  • PeriStats. Provides access to maternal and infant health-related data at the national, state, county, and city level by aggregating data from several government agencies and organizations. Topics include the timing and frequency of prenatal care, preterm birth, low birthweight, infant mortality, tobacco use, and health insurance coverage. Over 60,000 graphs, maps, and tables are available, and data are referenced to the relevant source. PeriStats is a service of the March of Dimes.

  • Pregnancy Risk Assessment Monitoring System (PRAMS). Presents state-specific, population-based data on maternal attitudes and experiences before, during, and immediately following pregnancy. PRAMS is a surveillance project of the Centers for Disease Control and Prevention (CDC) and state health departments.

  • State Health Facts Online. Contains state-level data on more than 500 health topics. View individual state profiles, or compare data for all states by category. For infant mortality data, click on the Health Status category and select one of several subcategories under Infants. For data about low birthweight and prematurity, click on the Health Status category, and select one of several subcategories under Births. This system is provided by the Kaiser Family Foundation.

  • Title V Information System (TVIS). Contains data from annual Title V Block Grant applications and reports submitted by all 59 U.S. states and jurisdictions. To identify state efforts to reduce infant mortality, conduct several searches: (1) Select Program Data; scroll to Medicaid/Non Medicaid Comparison and select Infants deaths per 1,000 live births; select a state and Annual Report Year; and click on Start Search. (2) Select Measurement and Indicator Data; select National Outcome Measures; select Most Recent Year Available or Multi-Year Report; select a state and infant mortality measure; click on Start Search. (3) Select Measurement and Indicator Data; scroll to State Data; select State Priority Needs Keyword Search; select Keyword: Morbidity/Mortality and Population: Infants; click on Start Search. (4) Select Measurement and Indicator Data; scroll to State Data; select State Outcome Measures; select Search By Keyword/Population; select a state and Keyword: Morbidity/Mortality and Population: Infants; click on Start Search. (5) View State Snapshots of Maternal and Child Health for a summary of each state's infant mortality data. TVIS is a service of the Maternal and Child Health Bureau (MCHB).

  • VitalStats. Presents tables, data files, and reports that allow users to access and examine birth and perinatal mortality data interactively. This system is provided by the National Center for Health Statistics (NCHS).

  • Also see the Morbidity & Mortality Weekly Reports (MMWR) and the National Center for Health Statistics (NCHS).
Literature and Research Databases
  • ClinicalTrials.gov. Provides access to information about clinical research studies for a wide range of conditions. Included are a summary of the purpose of the study, recruiting status, criteria for patient participation, location of the trial, and contact information. To identify studies, click on Search for Clinical Trials. Enter the search phrase infant mortality OR sudden infant death syndrome and click on Search to get your results. Conduct another search by entering the search phrase, pregnancy loss OR stillbirth OR miscarriage. Click on Search to get your results. ClinicalTrials.gov is a service of the National Institutes of Health (NIH) and is developed by the National Library of Medicine (NLM).

  • Cochrane Reviews. Presents systematic reviews of health care interventions internationally. Go to the box, Search abstracts & summaries, and type "infant mortality" OR "sudden infant death syndrome". Click on Search Reviews to get your results. Conduct another search by entering the phrase, "pregnancy loss" OR miscarriage OR stillbirth. Click on Search Reviews to get your results. Access to the full-text article requires a subscription that is available in many hospital and university health sciences libraries. The database is published by the Cochrane Collaboration, an international nonprofit organization based in the United Kingdom.

  • Database of Abstracts of Reviews of Effects (DARE). Contains summaries of systematic reviews that have met strict quality criteria. Included reviews have to be about the effects of interventions. Each summary also provides a critical commentary on the quality of the review. Search the database by typing "infant mortality" OR "sudden infant death syndrome" in the search box. Click on Search to get your results. Conduct another search by typing "pregnancy loss" OR miscarriage OR stillbirth in the search box. Click on Search to get your results. DARE is produced and maintained by the Centre for Reviews and Dissemination at the University of York.

  • HP2010 Information Access Project: Maternal, Infant and Child Health. Provides an automatic search mechanism for published literature indexed in PubMed related to the Healthy People 2010 MCH objectives that include reducing fetal and infant deaths. Also links to the narrative for the objectives and the complete chapter about MCH in the text, Healthy People 2010: Understanding and Improving Health (2nd ed.) (2000). This service is provided by the Partners in Information Access for the Public Health Workforce, a collaboration of federal agencies, public health organizations, and health sciences libraries.

  • Maternal and Child Health Library at the National Center for Education in Maternal and Child Health (NCEMCH), Georgetown University. Maintains several databases to collect, manage, and disseminate knowledge about MCH, with special emphasis on knowledge gained from initiatives and programs supported by the Maternal and Child Health Bureau (MCHB). The library's bibliographic databases are

    Healthy Start Collection Database. Comprises an online catalog of over 2,000 items developed by or used in Healthy Start sites, including brochures, bylaws, curricula, marketing materials, policies, and national evaluation reports along with other material related to maternal and infant health. Materials are classified according to the nine Healthy Start models of intervention that range from community-based consortia to risk prevention and reduction. The Healthy Start Initiative, established by MCHB in 1991, provides community-based, culturally competent, family-centered, and comprehensive perinatal health services to women, infants, and their families in communities with very high rates of infant mortality.

    MCHLine®. Comprises an online catalog of materials in the Maternal and Child Health Library. A selection of recent library items is listed in the bibliography, Infant Mortality. For library items about pregnancy loss, search MCHLine® by typing "pregnancy loss" in the keyword field of the database search form. Click on Search MCHLine to get your results. Also see the bibliography, Home Visiting and Resource Mothers.

    The Maternal and Child Health Library also offers organizations and programs databases. Also see the library's newsletter, MCH Alert: Tomorrow's Policy Today.

  • National Guideline Clearinghouse (NGC). Contains evidence-based clinical practice guidelines and related materials for health professionals. Identify guidelines by entering "infant mortality" OR "sudden infant death syndrome" in the Search field. Click on Search to get your results. Conduct another search by entering "pregnancy loss" OR miscarriage OR stillbirth in the Search field. Click on Search to get your results. The database is an initiative of the Agency for Healthcare Research and Quality (AHRQ).

  • National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center: A–Z Topic Index. Offers links to electronic resources collected from national, state, and local SIDS/Infant Death programs, as well as MCH organizations. The resources include fact sheets, brochures, booklets, posters, order forms, foreign-language materials, and multimedia formats.

  • Native Health Database. Contains citations for health-related articles, reports, surveys, and other documents about the health and health care of American Indians, Alaska Natives, and Canadian First Nations. To identify citations on the topic, enter "infant mortality" OR "sudden infant death syndrome" in the Keywords field. Click on Search to get your results. Conduct another search by typing "fetal death" in the Keywords field. Click on Search to get your results. The database is a service of the University of New Mexico Health Sciences Library and Informatics Center.

  • PubMed. Contains more than 19 million citations for biomedical articles from MEDLINE and life science journals. Citations may include links to full-text articles from PubMed Central or publisher web sites. To identify citations on the topic, enter the term infant mortality OR sudden infant death OR perinatal mortality in the search box. Click on Limits and make the following selections on the page: select a date (e.g. Published in the last 2 years); click on Languages: English; click on Species: Humans; and select Search Field Tags: MeSH Major Topic. Click on Search to get your results. Conduct another search by entering the search phrase fetal death OR stillbirth OR abortion, spontaneous and using the same limits as those established for your first search. Click on Search to get your results. To narrow your searches further or for additional searches, use the MeSH (Medical Subject Headings) database to identify terms. PubMed is a service of the National Library of Medicine (NLM).
Programs Databases
  • American Academy of Pediatrics (AAP): Community Pediatrics Grants/Projects Searchable Database. Comprises an archive of community pediatrics grant projects. To identify projects, select Topic: SIDS. Click on Basic Submit to get your results. Conduct another search by scrolling to Keyword Search and entering the term, infant mortality. Click on Keyword Submit to get your results.

  • Discretionary Grant Information System (DGIS). Contains program and performance measure data for more than 900 grants issued by the Maternal and Child Health Bureau (MCHB). Conduct several sets of searches to find grant information about infant mortality and pregnancy loss. To identify data about Healthy Start, an initiative to reduce the rate of infant mortality and improve perinatal outcomes, select Program Data, Healthy Start, and a topic to complete the search. To identify performance measure data for MCHB programs about infant mortality and pregnancy loss, select Performance Measures; select Performance Measure (again); scroll and click on a birthweight or mortality measure; click on Next; select a program; and click on Next to view data. To search for abstracts of MCHB discretionary grants about infant mortality and pregnancy loss, select Abstracts; type infant mortality in the search field; click on Exact phrase; and click on Search to get your results. Select Abstracts Search again; type sudden infant death syndrome in the search field; click on Exact phrase; and click on Search to get your results. Select Abstracts Search one more time; type miscarriage stillbirth in the search field; click on Any of the words; and click on Search to get your results. To find out about products and publications produced by MCHB training grantees on the topic, select Program Data, Training, and Search Products and Publications. Type infant mortality in the search field and click on Exact phrase. Click on Search to get your results. Select Publication Search to conduct another search. Type sudden infant death syndrome in the search field and click on Exact phrase. Click on Search to get your results. Select Publication Search one more time. Type miscarriage stillbirth in the search field and click on Any of the words. Click on Search to get your results.

  • Health Services Research Projects in Progress (HSRProj). Provides information about ongoing health services research and public health projects. To identify projects, enter infant mortality OR sudden infant death OR perinatal mortality in the search box. Click on Search to get your results. Conduct another search by entering fetal death OR stillbirth OR abortion, spontaneous in the search box. Click on Search to get your results. HSRProj is funded by the National Library of Medicine (NLM).

  • Maternal and Child Health Library at the National Center for Education in Maternal and Child Health (NCEMCH), Georgetown University. Maintains two databases to identify organizations and programs that address infant mortality and pregnancy loss:

    MCH Organizations Database. Lists over 2,000 government, professional, and voluntary organizations involved in MCH activities, primarily at a national level. Organizations focusing on infant mortality prevention appear in a list produced from the database. For organizations about pregnancy loss, type "pregnancy loss" in the keyword field of the database search form. Click on Search to get your results.

    MCH Projects Database. Comprises an online catalog of projects funded by the Maternal and Child Health Bureau (MCHB) through October 1, 2004. To identify projects that focus on the topic, enter "infant mortality" in the abstract field of the database search form. Click on Search to get your results. Conduct additional searches using the terms stillbirth and miscarriage. Several final reports from these projects are available online and include Healthy Start impact reports. See MCHB's Discretionary Grant Information System (DGIS) for information on projects funded after October 1, 2004.

  • National Association of County and City Health Officials (NACCHO): Model Practice Database. Contains information about model and promising state and local public health program practices. Search by state or health topic. For effective programs to address infant mortality and pregnancy loss, select Model Practice Database and choose Find a model or promising practice by category. Click on Maternal and Child Health.

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Electronic Newsletters and Online Discussion Forums

Resources for Families

Hotlines

  • First Candle/SIDS Alliance. Provides a nationwide, 24-hour, toll-free hotline in English and Spanish for expectant and new parents on ways to help their babies survive and thrive, for parents who have experienced a pregnancy loss or the death of a baby, and for professionals working with families. The hotline telephone number is (800) 221-7437.

  • Maternal and Child Health Bureau (MCHB) Hotline. Offers a hotline number to help pregnant women and mothers with newborns identify free or low-cost services for themselves and their babies. Telephone: (800) 311-BABY (311-2229); (800) 504-7081 (Spanish).

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Expectant and New Parents

Pregnancy Loss

Sudden and Unexpected Infant Death

Grieving Families

Resources on Factors That Contribute to Infant Mortality and Pregnancy Loss

Birth Defects

Injuries

Low Birthweight and Prematurity

Sleep Environment

Author: Susan Brune Lorenzo, M.L.S., Maternal and Child Health Library.
Reviewers: Suzanne Bronheim, Ph.D., National Center for Cultural Competence; Amanda Perez, M.S.W., Early Head Start National Resource Center at ZERO TO THREE; Olivia K. Pickett, M.A., M.L.S., Maternal and Child Health Library.