Infant Mortality and Pregnancy Loss Knowledge Path

Table of Contents

Introduction Overview Resources for Professionals Web Sites: A B C D E F G H I J K L M N O P Q R S T U V W X Y Z Additional Electronic Publications Databases: Data, Literature and Research, and Programs Electronic Newsletters and Online Discussion Forums Resources for Families Hotlines 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 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.

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.

Resources for Professionals

Web Sites: A-Z

• Association of Maternal and Child Health Programs (AMCHP): Infant Mortality. Offers information and resources about its programs to help state public health agencies and communities address infant mortality. Recent publications include
  
  AMCHP Partners with CityMatCH and NHSA to Eliminate Disparities in Infant Mortality. (2008). [Newsletter article].
  
  Investigating Troubling Trends: A Report of the AMCHP/CDC State Infant Mortality Collaborative. (2007). [Report].
  
  State-Local Teams Chosen to Participate in Partnership to Eliminate Disparities in Infant Mortality. (2008). [Press release].
  
  
• Association of SIDS and Infant Mortality Programs (ASIP). Hosts information about the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Project IMPACT, which is part of a national consortium of four centers supported by the Maternal and Child Health Bureau (MCHB) to address infant mortality and pregnancy loss. Offers contact information for state Maternal and Child Health (MCH) and Sudden and Unexpected Infant Death (SUID) programs; a listserv to support state and local infant-mortality and risk-reduction programs; a nationwide calendar of events related to sudden infant death syndrome (SIDS), SUID, infant mortality, and safe sleep environments; and resources for infant-death risk reduction and bereavement support. Project IMPACT serves as the communications hub for a national network of fetal, infant, and child mortality programs by convening, connecting, and providing technical support to state and local efforts. Also see the ASIP bibliography about grief and bereavement.
  
  
• Centers for Disease Control and Prevention (CDC). Offers resources and initiatives aimed at reducing infant mortality and pregnancy loss that include
  
  CDC's Division of Reproductive Health: Maternal and Infant Health. Contains links to reports, data, and other resources about promoting healthy pregnancy and infant health and preventing premature birth and infant illness and mortality, including SIDS and SUID. Recent publications and initiatives include
  
  
  • Sudden, Unexplained Infant Death Initiative (SUIDI). Presents information about an initiative to improve the investigation and reporting of SUID. Includes an SUID investigation reporting form and training materials to assist those who investigate infant deaths.
    
    
  CDC's Morbidity & Mortality Weekly Reports (MMWR). Presents data based on weekly reports to CDC by state health departments. Recent reports about infant mortality and pregnancy loss include
  
  
  • Apparent Disappearance of the Black-White Infant Mortality Gap—Dane County, Wisconsin, 1990-2007. (2009).
    
    
  • QuickStats: Fetal Mortality Rates, by Period of Gestation—United States, 1990-2005. (2009).
    
    
  • QuickStats: Infant Mortality Rates for 10 Leading Causes of Infant Death—United States, 2005. (2007).
    
    
  • QuickStats: Infant, Neonatal, and Postneonatal Annual Mortality Rates—United States, 1940-2006. (2009).
    
    
  • QuickStats: Preterm-Related Infant Mortality Rates, by Race/Ethnicity of Mother—United States, 2000 and 2005. (2008).
    
    
  CDC's National Center for Health Statistics (NCHS). Includes national data about infant mortality and pregnancy loss. Recent publications include
  
  
  • Challenge of Fetal Mortality. (2009). [Data brief].
    
    
  • Deaths: Final Data for 2006. (2009). This report includes infant mortality rates and lists leading causes of infant death.
    
    
  • FASTATS: Infant Health (rev. ed.). (2009). This fact sheet presents national infant mortality data statistics with links to full reports and data sets.
    
    
  • Fetal and Perinatal Mortality, United States, 2005. (2009). [Data brief].
    
    
  • Infant Mortality Statistics from the 2005 Period Linked Birth/Infant Death Data Set. (2008). This report presents data from the linked birth/infant death data set.
    
    
  • Recent Trends in Infant Mortality in the United States. (2008). [Data brief].
    
    
  • Also see the NCHS databases, Data 2010, Health Data Interactive, and VitalStats.
    
    
  CDC's Racial and Ethnic Approaches to Community Health Across the U.S. (REACH U.S.). Describes this initiative that supports community coalitions in designing, implementing, and evaluating community-driven strategies to eliminate health disparities in eight priority areas, one of which is infant mortality.
  
  Also see CDC's Pregnancy Risk Assessment Monitoring System (PRAMS), the National Center on Birth Defects and Developmental Disabilities (NCBDDD), and NCBDDD's brochure for health professionals about stillbirths.
  
  
• CityMatCH. Contains tools and resources for implementing the Perinatal Periods of Risk (PPOR) approach for mobilizing communities to reduce feto-infant mortality in U.S. cities. PPOR is a joint initiative of CityMatCH, the Centers for Disease Control and Prevention (CDC), the March of Dimes (MOD), and the Maternal and Child Health Bureau (MCHB).
  
  FIMR/HIV Pilot Project: Overview and Lessons Learned. Featuring Three Communities' Efforts to Improve Systems of Care for Women With HIV Infection. (2009). [Report].
  
  
• Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). Contains research and grant information, publications, and other resources for health professionals, researchers, and families about pregnancy and infant and child health topics, including pregnancy loss, birth defects, prematurity, and infant mortality. Reports describe the research and training supported by NICHD's Pregnancy and Perinatology Branch to improve the outcomes of pregnancy, reduce infant mortality, and minimize maternal and infant morbidities. Also see the Back to Sleep Campaign.
  
  
• First Candle. Hosts information about the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Program Support Center, which is part of a national consortium of four centers supported by the Maternal and Child Health Bureau (MCHB) to address infant mortality and pregnancy loss. Provides a hotline in English and Spanish for expectant and new parents on ways to help their infants survive and thrive, for parents who have experienced the death of an infant, and for professionals working with families. Offers education and training materials for health and human services professionals, including program manuals, PowerPoint presentations, information about public-education campaigns, and annotated citations for research articles. Some materials are available in Spanish. Also see First Candle's resources about infant mortality risk reduction, bereavement, and safe sleep environments.
  
  
• Healthy People 2010. Offers information and publications about this national health-promotion and disease-prevention initiative that is coordinated by the Office of Disease Prevention and Health Promotion (ODPHP). View the maternal, infant, and child health focus area to learn about the objectives related to infant mortality and pregnancy loss. See Data2010 for data about the objectives and the HP2010 Information Access Project for access to published literature related to the objectives. Also view proposed Healthy People 2020 objectives for maternal, infant, and child health.
  
  
• Joint Center for Political and Economic Studies: The Courage to Love Commission. Presents papers, PowerPoint presentations, and fact sheets from this initiative that analyzed racial and ethnic disparities in infant mortality. Papers include
  
  Inequality Matters: Infant Mortality in the Global Village. (2007).
  
  Maternal Nutrition and Infant Mortality in the Context of Relationality. (2007).
  
  Race, Stress, and Social Support: Addressing the Crisis in Black Infant Mortality. (2007).
  
  
• March of Dimes (MOD). Contains resources for health professionals and expectant and new parents in English and Spanish about preconceptional and prenatal care, birth defects, pregnancy loss, prematurity, bereavement, and how to get involved in improving infants' health by reducing the incidence of birth defects and infant mortality. Offers perinatal statistics (including infant mortality rates), continuing-education modules, medical reference information, and video and audio resources.
  
  
• Maternal and Child Health Bureau (MCHB). Describes MCHB's projects and initiatives on behalf of America's women, infants, children, adolescents, and their families. Initiatives include Healthy Start, a program to address factors contributing to infant mortality, low birthweight, and other adverse perinatal outcomes in high-risk populations. MCHB's National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Cooperative Agreement Program is a national consortium of four centers: (1) National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center at Georgetown University, (2) National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Program Support Center at First Candle, (3) National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Project IMPACT at the Association of SIDS and Infant Mortality Programs (ASIP), and (4) National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Project at the National Center for Cultural Competence. Resources about infant mortality and pregnancy loss include
  
  Evidence of Trends, Risk Factors, and Intervention Strategies: A Report from the Healthy Start National Evaluation 2006—Racial and Ethnic Disparities in Infant Mortality. (2008). [Report].
  
  Improving Infant Death Investigation through Doll Re-Enactment. (2009). [Archived Webcast].
  
  Infant Mortality Reduction: Interconception Care In Michigan. (2008). [Archived Webcast].
  
  Let’s Make It Easy While Getting the Most from Your Hard Work on Child Death Review Reporting. (2009). [Archived Webcast].
  
  Profile of Healthy Start: Findings from Phase I of the Evaluation 2006. (2008). [Report].
  
  Sudden Unexpected Infant Death (SUID): National Developments, Initiatives, Studies and Opportunities. (2009). [Archived Webcast].
  
  Also see the Maternal and Child Health Bureau (MCHB) Hotline, Maternal and Child Health Library, the Title V Information System, and the Discretionary Grant Information System (DGIS).
  
  
• National Center for Child Death Review. Describes the child death review process for infants, children, and adolescents from birth through age 18; offers tools for child death review teams; provides state program information; and presents child mortality data by state. The center is funded by the Maternal and Child Health Bureau (MCHB).
  
  
• National Center for Cultural Competence (NCCC). Hosts information about the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Project, which is part of a national consortium of four centers supported by the Maternal and Child Health Bureau (MCHB) to address infant mortality and pregnancy loss. Provides technical assistance and develops resources on cultural and linguistic competence to help programs effectively address racial and ethnic disparities in perinatal, infant, and child mortality and pregnancy loss. Resources include a set of promising practices for cultural and linguistic competence in addressing SIDS/infant death (ID), training materials, a literature review, a self-assessment checklist, a consultants list, and links to related resources about cultural competence and infant mortality. Information is available in English and Spanish. Recent publications include
  
  Building Integrated Systems to Address Sudden Unexpected Infant Death. (2007). [Report].
  
  Organizational Policy Supports Families in Times of Crisis: Fredericksburg, VA. Promising Practices for Cultural and Linguistic Competence in Addressing Sudden Infant Death Syndrome and Other Infant Death. (2009). [Report].
  
  
• National Fetal and Infant Mortality Review Program (NFIMR). Contains a wealth of resources for implementing the fetal and infant mortality review (FIMR) method, including a directory of state and community FIMR projects, program descriptions, data-abstraction forms, sample laws to implement and safeguard FIMR proceedings, and an online discussion group. NFIMR is a collaborative effort between the American College of Obstetricians and Gynecologists (ACOG) and the Maternal and Child Health Bureau (MCHB). Recent publications include
  
  Annotated Bibliography on Grief and Bereavement Following Pregnancy Loss, Perinatal and Infant Death (rev. ed.). (2009).
  
  Fetal and Infant Mortality Review Manual: A Guide for Communities (2nd ed.). (2009). [Manual].
  
  
• National Healthy Start Association (NHSA). Describes the Healthy Start program and provides general information about infant mortality, low-birthweight infants, and racial disparities in perinatal outcomes. Includes a directory of Healthy Start programs nationwide and a newsletter. Funded by the Maternal and Child Health Bureau (MCHB), Healthy Start provides community-based, culturally competent, family-centered, comprehensive perinatal health services to women, infants, and their families in communities with very high rates of infant mortality. Recent publications include
  
  National Infant Mortality Awareness Month Toolkit. (2009). This toolkit aims to help Healthy Start projects promote the effectiveness of programs and efforts to reduce infant deaths, low birthweight, preterm births, and disparities in perinatal outcomes.
  
  Also see the Maternal and Child Health Library's Healthy Start Collection Database for a catalog of materials developed by Healthy Start programs.
  
  
• National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center. Presents a wealth of resources for health and human service professionals, including first responders and child care providers, as well as for families about risk reduction and bereavement for pregnancy loss and sudden and unexpected infant and child death. The center is part of a national consortium of four centers supported by the Maternal and Child Health Bureau (MCHB) to address infant mortality and pregnancy loss. Resources include fact sheets, bibliographies, statistics, Spanish-language materials, a multimedia collection, a resource database, journal article summaries, and most recently:
  
  First Candle's 2009 Research and Advocacy Symposium: Multimedia Proceedings. (2009). These podcasts are presented collaboratively with First Candle.
  
  Training Toolkit. (2009).
  
  Also see the center's resources about bereavement and safe sleep environments, and the MCH Alert.
  
  
• Office of Minority Health: Infant Health. Contains statistics about infant mortality among racial and ethnic groups and a fact sheet and list of links to publications and Web sites about infant mortality. Initiatives include
  
  A Healthy Baby Begins with You. Presents information about this national print and radio campaign to raise awareness about infant mortality with an emphasis on the African-American community. Includes campaign materials and infant mortality disparities fact sheets. Also presents information about another phase of the campaign, the Preconception Peer Educators (PPE) Program, which is designed to educate the college-age population about preconception health and care and to train them to serve as ambassadors for their peers who are not attending college.
  

  

Additional Electronic Publications

• Center for Health Care Strategies. 2007. Collaborating to Improve Birth Outcomes in New Jersey: A CHCS Project Spotlight. Hamilton, NJ: Center for Health Care Strategies. This report profiles the experiences and lessons learned from the New Jersey Collaborative to Improve Birth Outcomes and Health Status of Children.
  
  
• Egerter S, Braveman P, Pamuk E, Cubbin C, Dekker M, Pedragon V, Sadegh-Nobari T. 2008. America's Health Starts with Healthy Children: How Do States Compare? Princeton, NJ: Robert Wood Johnson Foundation Commission to Build a Healthier America. This chartbook examines state and national data on two widely used measures of child health: infant mortality and children's general health status to document how healthy our nation's children are now and how healthy they could be if we as a nation were realizing our full health potential.
  
  
• Jocson M, Ramstrom K, Nettesheim-Engel K. 2007. Survey of California Fetal Infant Mortality Review Programs. Sacramento, CA: California Department of Public Health. This report describes the results of a survey of California FIMR coordinators about the structure of current California FIMR programs, gaps in the FIMR process, and support and training needs.
  
  
• Kids Count, Voices for Virginia's Children. 2007. Infant Mortality: Understanding the Complexities of Death Among Virginia's Youngest Children. Richmond, VA: Voices for Virginia's Children. This data brief describes infant mortality rates in Virginia and examines its causes and risk factors.
  
  
• Levi J, Cimons M, Johnson K. 2008. Healthy Women, Healthy Babies. Washington, DC: Trust for America's Health (TFAH). This report identifies issues and obstacles facing the United States in promoting preconception care, and it recommends actions to improve women's health and thereby ensure healthier infants.
  
  
• Missouri Department of Social Services, State Technical Assistance Team. 2007. Preventing Child Deaths in Missouri: The Missouri Child Fatality Review Program Annual Report for 2006. Jefferson City, MO: Missouri Child Fatality Review Program, Missouri Department of Social Services. This report provides information about the Missouri Child Fatality Review Program, confidentiality issues, different categories of child fatalities, findings related to infant deaths, fetal and infant mortality review, and SUIDs.
  
  
• National Conference of State Legislatures (NCSL). 2009. Sudden Infant Death Syndrome (SIDS): State Laws (rev. ed). Washington, DC: National Conference of State Legislatures. This compilation lists states with laws related to SIDS and offers a brief description of each law with links to more detailed information.
  
  
• Saenz R. 2007. Growing Color Divide in U.S. Infant Mortality. Washington, DC: Population Reference Bureau. This brief describes racial disparities in infant mortality.
  
  
• UNICEF. 2009. The State of the World's Children 2009. New York, NY: UNICEF. Table 1: Basic indicators contains infant mortality rate comparisons by country.
  

  

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.
  
  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.
  

  

Electronic Newsletters and Online Discussion Forums

• Centers for Disease Control and Prevention (CDC): National Birth Defects Prevention Network Listserv. This electronic discussion group aims to enhance communication among public health professionals working at the state level in birth defects surveillance and prevention.
  
  
• Consumer Product Safety Commission (CPSC). Offers several electronic alert services for consumer product recalls and safety news, including those products used in homes and communities that are potentially hazardous for infants. CPSC also produces RSS (Really Simple Syndication) feeds to automatically receive updates about new recalls and new podcasts with safety news.
  
  
• Maternal and Child Health Library: MCH Alert: Tomorrow's Policy Today. This weekly electronic newsletter provides timely reference to research, findings, policy developments, recently released publications, new programs, and initiatives affecting the MCH community. On the last Friday of each month, the newsletter focuses on infant mortality and pregnancy loss.
  
  
• National Fetal and Infant Mortality Review Program (NFIMR) Listserv. This online discussion group aims to encourage an information exchange among FIMR programs and individuals interested in fetal and infant mortality reviews.
  
  
• National Healthy Mothers, Healthy Babies Coalition (HMHB).
  
  Monday Morning Memo. This weekly newsletter presents summaries of news and resources about maternal and infant health. Infant mortality and pregnancy loss is frequently addressed.
  
  Text4baby Tuesday. This weekly newsletter presents information about Text4baby, which offers free weekly messages by cell phone to help pregnant women and new parents through pregnancy and their baby's first year. Signup for Text4baby Tuesday to receive news from the national campaign and get program updates on partners' innovative promotion across the country.
  
  
• National Healthy Start Association (NHSA): Getting Off to a Healthy Start. This newsletter informs Healthy Start staff and others in the MCH community about successful community-based approaches to reducing infant mortality and improving perinatal outcomes. The newsletter also highlights research and evaluation findings, legislative activities, and conference announcements.
  
  
• National Sudden and Unexpected Infant/Child Death & Pregnancy Loss Project IMPACT Listserv. This electronic discussion group for state and local infant mortality and risk-reduction programs encourages participants to share information, promote policy and legislative changes, and foster partnerships and communication.
  
  
• Also see Preemies Today.
  

  

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).
  

  

Expectant and New Parents

• First Candle: New and Expectant Parents. Presents tips for pregnant women about having a healthy baby, breastfeeding, and infant care, including tips for new parents and caregivers about ways to reduce the risk of SIDS. Offers a hotline in English and Spanish for expectant and new parents on ways to help their baby survive and thrive. Also see First Candle's resources about safe sleep environments.
  
  
• March of Dimes (MOD): Pregnancy and Newborn Health Education Center. Offers information in English and Spanish about preconception and prenatal care, pregnancy complications, labor and delivery, breastfeeding, and newborn care. Topics include safety for babies and risk factors for SIDS. Resources include an online question-and-answer service in English and Spanish and video and audio resources.
  
  
• National Healthy Mothers, Healthy Babies Coalition (HMHB). Includes fact sheets, published interviews with experts, and information in a question-and-answer format about preconception planning, prenatal care, and infant care. Use HMHB's new service:
  
  Text4baby. Offers free weekly messages by cell phone in English and Spanish to help pregnant women and new parents through pregnancy and their baby's first year.
  
  
• Also see Resources on Factors That Contribute to Infant Mortality and Pregnancy Loss for many resources for expectant and new parents.
  
  
• See too the Maternal and Child Health Library knowledge path, Preconception and Pregnancy and the resource brief, Breastfeeding.
  

  

Pregnancy Loss

• March of Dimes (MOD): Pregnancy and Newborn Loss. Offers information in English and Spanish about ectopic and molar pregnancy, miscarriage, stillbirth, and neonatal death. Resources include
  
  Miscarriage: It's More Common Than You Think. (2008). [Podcast].
  
  
• MedlinePlus: Pregnancy Loss. Includes links to information in English and Spanish about miscarriage and stillbirth. Includes a link to automatic searches in MEDLINE for recent articles on the topic and links to local health professionals in several states.
  
  
• See the National Center on Birth Defects and Developmental Disabilities (NCBDDD) information page about stillbirths.
  

  

Sudden and Unexpected Infant Death

• CJ Foundation for SIDS. Includes information and materials about SIDS and steps to reduce the risk for SIDS.
  
  
• MedlinePlus: Sudden Infant Death Syndrome. Includes links to information in English and Spanish about SIDS.
  
  
• National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center: What Is SIDS?. Offers information in English and Spanish about SIDS and its characteristics, diagnosis, risk factors, research, and prevention initiatives.
  

  

Grieving Families

• Compassionate Friends: Supporting Family After a Child Dies. Offers friendship and understanding to families who have experienced pregnancy loss and the death of a child of any age, from any cause. Provides support to bereaved parents, grandparents, and siblings via online support groups and local chapters. Also offers a collection of bereavement brochures.
  
  
• First Candle: When a Baby Has Died. Presents resources for families who have experienced the death of a baby, including a hotline in English and Spanish, information about coping with grief, and contact information for local support groups.
  
  
• March of Dimes (MOD): Pregnancy and Newborn Loss. Offers information for families who have experienced a miscarriage, stillbirth, or death of a baby. Resources explain grief, discuss how to deal with your feelings and ask for help, and suggest ways to remember your baby.
  
  
• National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center: Bereavement Support. Offers publications for parents, families, caregivers, and others touched by SIDS and other infant death. The center also presents the following recent podcasts about bereavement:
  
  Home Visiting and Grief Counseling. (2008).
  
  Family Perspectives on Stillbirth and Sudden Unexpected Infant Death. (2009).
  
  Peer-Support Programs. (2009).
  
  Perinatal Grief Support for Families: The Role of Clergy, Congregation, and Community. (2009).
  
  
• Pregnancy Loss and Infant Death Alliance (PLIDA). Presents practice guidelines, position statements, and a resource list about the grief experienced by families from pregnancy loss and the death of a baby and the comprehensive and compassionate care needed by these families. Recent publications include
  
  Practice Guidelines: Offering the Baby to Bereaved Parents. (2008).
  
  Practice Guidelines: When Bereaved Parents Want to Hold Their Baby. (2008).
  
  
• Share Pregnancy and Infant Loss Support. Presents a collection of brochures in English and Spanish for bereaved families experiencing pregnancy loss or the death of a baby, contact information for local support groups, a blog, a Facebook page, and helpful hints for those caring for bereaved families. Recent resources include
  
  Understanding the Grief Process. (2009). [Brochure].
  

  

Resources on Factors That Contribute to Infant Mortality and Pregnancy Loss

Birth Defects

• Centers for Disease Control and Prevention (CDC): National Center on Birth Defects and Developmental Disabilities (NCBDDD). Includes program information and publications about promoting optimal fetal and infant development and preventing birth defects, a leading cause of infant mortality. NCBDDD's activities include surveillance, research, technical assistance to states, and provision of information and education to the public. Recent publications include
  
  Update on Overall Prevalence of Major Birth Defects—Atlanta, Georgia, 1978-2005. (2008). [Report].
  
  
• March of Dimes (MOD): Birth Defects and Genetic Conditions. Presents a collection of fact sheets about birth defects and genetic conditions and information about newborn screening tests. Also see MOD's database, PeriStats.
  
  
• See the National Birth Defects Prevention Network Listserv.
  
  
• Also see the knowledge path, Preconception and Pregnancy.
  

  

Injuries

• Consumer Product Safety Commission (CPSC): Crib Safety and SIDS Reduction. Presents safety news, tips, checklists, and other materials in English and Spanish about potentially hazardous consumer products for infants. Subscribe to an e-mail announcement service and RSS feeds to receive updates on new consumer product recalls and podcasts. CPSC evaluates the safety of products sold to the public.
  
  
• Safe Kids USA. Offers safety tips, product recalls, information about child safety laws and regulations, car seat inspection station contact information, and other resources about preventing accidental injuries among infants, children, and adolescents. Safe Kids is a global network of organizations whose mission is to prevent accidental childhood injury, a leading killer of children ages 14 and under.
  
  
• Also see the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center resource about shaken baby syndrome (abusive head trauma).
  

  

Low Birthweight and Prematurity

• March of Dimes: Premature Birth. Offers information in English and Spanish about prematurity for health professionals, women who are pregnant or are thinking about pregnancy, and families with infants in the neonatal intensive care unit (NICU). Presents patient-education information about preventing premature delivery, parenting in the NICU, coping with the NICU experience, and caring for a premature infant. Also includes a preterm-labor-assessment toolkit, prematurity statistics and research information, continuing education resources, fact sheets, a series of podcasts, information about the March of Dimes Prematurity Campaign, information about the costs of prematurity to families and businesses, and personal stories. Also see MOD's fact sheet about low birthweight.
  
  
• PreemieCare. Presents information and support to families of infants born preterm. Includes contact information for local support groups.
  
  
• Preemies Today. Presents a monthly electronic newsletter featuring research-based articles about the health and development of premature infants and their families, stories from the families of premature infants, and resource suggestions. Preemies Today also offers online support for families of premature infants.
  
  
• Promising Practices Network (PPN) on Children, Families and Communities: Low Birth Weight/Prematurity Resources and Tools. Presents an issue brief and links research-based resources about preventing low-birthweight infants.
  
  
• Surgeon General's Conference on the Prevention of Preterm Birth. Presents the Webcast, agenda, and background materials and information for this June 2008 conference to increase awareness of preterm birth in the United States, review key findings and reports, and establish an agenda for activities in the public and private sectors to mitigate this public health problem.
  
  
• AWHONN Later Preterm Infant Initiative. 2007. What Parents of Late Preterm (Near-Term) Infants Need to Know. Johnstown, PA: Association of Women's Health, Obstetric and Neonatal Nurses. This fact sheet, which is geared toward parents of infants born 3 to 6 weeks early, provides information about what parents need to know to keep their infant healthy, and it lists questions that parents should ask before leaving the hospital. The fact sheet is also available in Spanish.
  
  
• Behrman RE, Stith Butler A, eds. 2007. Preterm Birth: Causes, Consequences, and Prevention. Washington, DC: National Academies Press. This books assesses the problem of preterm birth in the United States with respect to its causes and outcomes, including higher mortality and morbidity rates. The report recommends a multidisciplinary research agenda aimed at improving the ability to predict whether a woman is at risk for preterm labor, the ability to prevent preterm labor, and understanding the health and developmental problems to which preterm infants are vulnerable.
  
  
• Pinn VW. 2009. Pinn Points on Women’s Health: Preterm Birth. Bethesda, MD: Office of Research on Women’s Health (ORWH). In this podcast, Vivian W. Pinn, M.D., interviews Catherine Spong, M.D., about what women can do to maximize their chances for a healthy pregnancy and reduce the risk of giving birth prematurely. A transcript of the podcast is also available.
  
  
• See the Kids Count data brief, Too Many Babies Born Before Their Time: The Growing Problem of Preterm Births (2007), the Joint Center for Political and Economic Studies report, Trends in Child Health 1997-2006: Assessing Racial/Ethnic Disparities in Low Birthweight (2009), the Centers for Disease Control and Prevention (CDC) report, Assisted Reproductive Technology and Trends in Low Birthweight—Massachusetts, 1997-2004 (2009), and the American Academy of Pediatrics (AAP) clinical report, Antenatal Counseling Regarding Resuscitation at an Extremely Low Gestational Age (2009).
  
  
• Also see the Maternal and Child Health Library bibliography, Prematurity, and the knowledge path, Preconception and Pregnancy.
  

  

Sleep Environment

• American Academy of Pediatrics (AAP) Sleep Issues. Presents resources for families, health professionals, and child care providers about creating a safe sleep environment for infants and reducing the risk for SIDS. Resources and initiatives include
  
  Changing Concept of Sudden Infant Death Syndrome: Diagnostic Coding Shifts, Controversies Regarding the Sleeping Environment, and New Variables to Consider in Reducing Risk (rev. ed.). (2005, reaffirmed 2009). [Policy statement].
  
  Healthy Child Care America Back to Sleep Campaign. Contains brochures for parents and child care providers and training and education materials for health professionals about reducing the incidence of SIDS in child care settings. Recent materials include
  
  
  • Back to Sleep, Tummy to Play (rev. ed.). (2008). [Brochure]. Also available in Spanish.
    
    
  • Child Care Provider's Guide to Safe Sleep: Helping You to Reduce the Risk of SIDS (rev. ed.). (2008). [Fact sheet]. Also available in Spanish.
    
    
  • Parent's Guide to Safe Sleep: Helping You to Reduce the Risk of SIDS (rev. ed.). (2008). [Fact sheet]. Also available in Spanish.
    
    
  • Reducing the Risk of SIDS in Child Care (rev ed.). (2008). [Speaker's kit]. Also available in Spanish.
    
    
  • Reducing the Risk of Sudden Infant Death Syndrome in Child Care and Changing Provider Practices: Lessons Learned From a Demonstration Project. (2008). [Journal article].
    
    
• Back to Sleep Campaign. Contains information about this national campaign aimed at health professionals, child care providers, and families to promote placing infants to sleep on their backs to reduce the risk of SIDS. Includes outreach materials in English and Spanish and scientific publications. The campaign is sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the Maternal and Child Health Bureau (MCHB), the American Academy of Pediatrics (AAP), First Candle, and the Association of SIDS and Infant Mortality Programs (ASIP). Recent resources include
  
  Curriculum for Nurses: Continuing Education Program on SIDS Risk Reduction. (2007).
  
  Infant Sleep Position and SIDS: Questions and Answers for Health Care Professionals. (rev. ed.). (2007). [Booklet].
  
  
• First Candle. Presents resources for health professionals, child care providers, and expectant and new parents about safe sleep environments. Resources and initiatives include
  
  Bedtime Basics: An Infant Sleep Campaign. Presents information and materials for this educational outreach campaign to help prevent infant deaths caused by unsafe sleep practices. Recent resources include
  
  
  • Guidelines for Products Intended for Sleeping Babies: Help Your Baby Survive and Thrive (rev. ed) (2008). [Position statement].
    
    
  • Re-Breathing Carbon Dioxide and Overheating: Leading Risk Factors for SIDS. (2007). [Position statement].
    
    
  • Room Sharing Is Safer Than Bed Sharing. (2007). [Brochure and information card].
    
    
  Important Safe Sleep Tips (rev. ed.) (2009). [Fact sheet].
  
  Model Behavior: The Most Important Modeling Job of Your Life. Presents information and materials for this national professional education campaign that urges nurses in neonatal intensive care units and well-baby nurseries to incorporate safe sleep policies into their existing protocols.
  
  
• National Resource Center for Health and Safety in Child Care and Early Education (NRC). Presents each state's child care licensure regulations that includes those involving safe sleep environments for infants. Also offers Reducing the Risk of Sudden Infant Death Syndrome (2nd ed.) (2002), a compilation of the 10 national standards on reducing the risk of SIDS in child care settings based on the manual, Caring for Our Children: National Health and Safety Performance Standards—Guidelines for Out-of-Home Child Care (2nd ed.) (2002).
  
  
• National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center: Safe Sleep Environment. Offers brochures for families and a bibliography of additional materials about creating a safe sleep environment. Recent materials include
  
  Helping Baby "Back to Sleep" (rev. ed.). (2009). [Brochure].
  
  Safe Sleep for Your Baby Around the Clock: Birth to 12 Months (rev. ed.). (2009). [Brochure].
  
  
• Allegheny County Health Department, Pennsylvania Chapter of the American Academy of Pediatrics. 2007. Model Hospital Policy Manual and Tool Kit: Incorporating Infant Safe Sleep Practices in a Health Care Setting / Tool Kit for Educating Parents and Caregivers About Infant Safe Sleep. Pittsburgh, PA: Allegheny County Health Department. This manual is intended to provide hospitals and other health care facilities with information about implementing and modeling safe sleep practices within their facility as well as to educate parents and caregivers about infant safe sleep.
  
  
• Kallash H. 2008. Sudden Infant Death Syndrome (SIDS) Risk Reduction: Broadening Our Perspective. A Continuing Education Curriculum for Nurses. Seattle, WA: Seattle Children's Hospital. This online training video for nurses describes SIDS and a safe sleep environment, lists the critical risk-reduction messages for families and caregivers, lists barriers to back sleeping, describes nurses' role as educator to parents and caregivers, and describes ways to effectively communicate risk-reduction messages to parents and caregivers.
  
  
• Leonard V. 2009. Reducing the Risk of SIDS for Infants in Our Care. Berkeley, CA: California Childcare Health Program. This fact sheet for child care providers defines SIDS and identifies risk factors. Also available in Spanish.
  
  
• Minnesota SIDS Center, Children's Hospitals and Clinics of Minnesota. 2007. Safe and Asleep in a Crib of Their Own. St. Paul, MN: Minnesota Department of Health. This illustrated brochure for parents and caregivers provides safe sleep tips for newborns. It discusses suffocation dangers of sleeping with adults, soft surfaces and bedding, and inappropriate sleeping spaces.
  
  
• Also see the Consumer Product Safety Commission (CPSC).
  

  

Infant Mortality and Pregnancy Loss: Knowledge Path, 5th ed. (August 2009). (Updated: March 2010).
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.

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