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Infant Mortality and Pregnancy Loss
Knowledge Path

Introduction

This knowledge path about infant mortality and pregnancy loss has been compiled by the MCH 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, pregnancy and preconception, and safe sleep environments. This knowledge path for health and social services professionals, policymakers, researchers, child care providers, and families will be updated periodically.

Related topics: 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 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 infant mortality risks.

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.

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 national infant mortality rates by race and ethnicity, state, leading causes of death, infant characteristics such as birthweight, and maternal factors such as receipt of prenatal care. FastStats: Infant Health (rev. ed.) (2010) presents the latest national infant mortality statistics. The data brief, Fetal and Perinatal Mortality, United States, 2005 (2009) presents national data and examines trends in pregnancy loss.

Resources for Professionals

Websites

• Association of SIDS and Infant Mortality Programs (ASIP). 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 by organizations whose work is related to sudden infant death syndrome (SIDS), SUID, infant mortality, and safe sleep environments; a collection of promising practices for addressing SUID; and other resources. ASIP supports state and local infant and child death programs through sharing information, promoting policy and legislative changes, building upon resources, and fostering partnerships and communication. ASIP and the Association of Maternal and Child Health Programs (AMCHP) co-sponsor a series of webinars to strengthen services related to SUID, SIDS, safe sleep environments for infants, and bereavement. Topics include research, new national initiatives, promising practices, and policy and legislative activities. Recent webinars and accompanying background material include
  
  Addressing Racial Disparities in Infant Sleep Practice: New Perspectives and Recommendations. (2010).
  
  Infant Sleep Position and Bed Sharing: Using PRAMS to Impact Programs and Policy. (2011).
  
  New Research into Sudden Infant Death: Unraveling the Mystery of SIDS. (2010).
  
  Opportunities in Health Reform to Prevent Infant Death. (2010).
  
  Sudden Unexpected Infant Death (SUID): Research, Success and Challenges. (2010).
  
  
• Centers for Disease Control and Prevention (CDC). Resources and initiatives aimed at reducing infant mortality and pregnancy loss include
  
  CDC's Division of Reproductive Health: Maternal and Infant Health Research. 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. CDC's Sudden, Unexplained Infant Death Initiative (SUIDI) aims to improve the investigation and reporting of SUID. Resources include an SUID investigation reporting form and training materials to assist those who investigate infant deaths.
  
  CDC's Morbidity & Mortality Weekly Report (MMWR). Reports that summarize data submitted to CDC weekly by state health departments. Search for reports on the topics by entering "infant mortality" in the search field and a publication date range. Click on Search to get your results. Conduct another search by entering "pregnancy loss" OR stillbirth OR miscarriage.
  
  CDC's National Center for Health Statistics (NCHS). National data about infant mortality and pregnancy loss organized as follows:
  
  
  • View linked birth and infant death data for information from the birth and death certificates for each infant who dies in the United States. Information from the birth certificate such as age, race, and Hispanic origin of the parents, birthweight, period of gestation, plurality, prenatal care usage, maternal education, live birth order, marital status, and maternal smoking is linked to information from the corresponding death certificate such as age at death and underlying and multiple causes of death. Also see the Linked Birth/Infant Death Data Set to search the data sets.
    
    View fetal death data for information about pregnancy loss in the United States.
    
    View the National Vital Statistics Reports for monthly reports about infant births and deaths and special reports that cover infant mortality and pregnancy loss rates by race, gender, and leading causes of infant death.
    
    Behind International Rankings of Infant Mortality: How the United States Compares with Europe. (2009). [Data brief].
    
    
  CDC's Racial and Ethnic Approaches to Community Health Across the U.S. (REACH U.S.). Information about this initiative to support community coalitions in designing, implementing, and evaluating community-driven strategies to eliminate health disparities among racial and ethnic groups in eight priority areas, one of which is infant mortality.
  
  Also see CDC's Pregnancy Risk Assessment Monitoring System (PRAMS) and the National Center on Birth Defects and Developmental Disabilities (NCBDDD).
  
  
• CityMatCH. Tools and resources for implementing the Perinatal Periods of Risk (PPOR) approach for mobilizing communities to reduce infant mortality and pregnancy loss 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). Additional resources about infant mortality include
  
  Community Journeys to Reduce Infant Mortality by Addressing Racism: Translating Learning into Action. (2010). [Webinar co-produced with the National Association of County and City Health Officials (NACCHO)].
  
  History, Highlights and Hope: Shattering the U.S. Infant Mortality Glass Ceiling. (2010). [Webinar co-produced with the National Association of County and City Health Officials (NACCHO)].
  
  
• Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). 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. Includes information about 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. Resources include
  
  Continuing Education Program on SIDS Risk Reduction for Nurses. This continuing education (CE) module was produced by NICHD in partnership with several nursing organizations, First Candle, and the National Institute of Nursing Research to provide nurses with information about SIDS and tools to effectively communicate risk-reduction techniques to parents and caregivers. Includes communication materials to help nursing organizations inform their membership about the CE program.
  
  Also see the Back to Sleep Campaign.
  
  
• First Candle. 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 program and legislative information, training, and educational tools for health and social services professionals. Additional resources include
  
  Helping Babies, Healing Families: A Program Manual and Trainer's Guide for Sudden and Unexpected Infant/Child Death and Pregnancy Loss. (2006, 2010). This online manual and trainer's guide is designed to support the staff of local and state programs to provide comprehensive SIDS and infant death risk reduction and bereavement support services. The online resource was adapted from a 2006 print document. The resource sections were updated in 2010 by the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center.
  
  Also see First Candle's resources for expectant and new parents and resources about bereavement and safe sleep environments.
  
  
• Healthy People 2020. Information about this national health-promotion and disease-prevention initiative of the Department of Health and Human Services. View the overview, objectives, and recommended interventions and resources for maternal, infant, and child health.
  
  
• Joint Center for Political and Economic Studies. Journal articles, press releases and other materials from the Commission on Paternal Involvement in Pregnancy Outcomes (CPIPO), an initiative focusing on the role of expectant fathers in pregnancy outcomes. The Courage to Love Commission, an initiative analyzing racial and ethnic disparities in infant mortality, presents papers, PowerPoint presentations, and fact sheets. Recent publications include
  
  Commission Outlook: Best and Promising Practices for Improving Research, Policy, and Practice on Paternal Involvement in Pregnancy Outcomes. (2010).
  
  
• March of Dimes (MOD). Resources for health professionals and expectant and new parents in English and Spanish about preconception 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), CE modules, medical reference information, video and audio resources, and research grant information.
  
  
• Maternal and Child Health Bureau (MCHB). Information about 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. In addition, MCHB's National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Cooperative Agreement Program is a national consortium of four centers: (1) the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center at Georgetown University, (2) the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Program Support Center at First Candle, (3) the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Project IMPACT at the Association of SIDS and Infant Mortality Programs (ASIP), and (4) the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Project at the National Center for Cultural Competence. MCHB's resources include
  
  MCHCOM.com. A series of video and audio webcasts to support communication and collaboration between state and federal maternal and child health (MCH) professionals. Slides, transcripts, and background materials accompany each webcast. Recent webcasts related to infant mortality and pregnancy loss include
  
  Changes to the National Healthy Start Performance Measures. (2010).
  
  Maternal, Infant, and Early Childhood Home Visiting Program. (2010).
  
  Rewards of Collaboration: Healthy Start and Early Head Start in Action. (2010).
  
  Also see the Maternal and Child Health Bureau (MCHB) Hotline, the MCH Library, the Title V Information System, and the Discretionary Grant Information System (DGIS).
  
  
• National Center for Cultural Competence (NCCC). 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. Presents resources about 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, training materials, a self-assessment checklist, a consultants list, and links to related resources. Information is available in English and Spanish. Recent resources include
  
  Cultural and Linguistic Competence Organizational Assessment Instrument for Fetal and Infant Mortality Review Programs. (2009). A user's guide accompanies the tool.
  
  
• National Fetal and Infant Mortality Review Program (NFIMR). 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, training tools, 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
  
  Fetal and Infant Mortality Review: Making a Difference in the Community. (2009). [Brochure].
  
  
• National Healthy Start Association (NHSA). Information about the federal Healthy Start program and its efforts to address infant mortality, low-birthweight infants, and racial disparities in perinatal outcomes. Includes a directory of Healthy Start programs nationwide, current NHSA programs and initiatives, and a newsletter and blog. Funded by the Maternal and Child Health Bureau (MCHB), the federal Healthy Start program 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 produced by NHSA include
  
  Federal Healthy Start Initiative: A National Network for Effective Home Visitation and Family Support Services (2010). [White paper].
  
  Infant Mortality and Racism: Action Learning Collaborative Meeting Summary. (2009). [Summary of a meeting by NHSA, CityMatCH, and the Association of Maternal and Child Health Programs (AMCHP)].
  
  It Takes Two to Tango: Defining the Role of Fathers. (2010). [Issue brief].
  
  National Infant Mortality Awareness Month Toolkit. (2010).
  
  Also see the MCH Library Healthy Start Collection Database for an online catalog of materials developed by Healthy Start programs.
  
  
• National Center for the Review and Prevention of Child Deaths. Information about the child death review process for infants, children, and adolescents from birth through age 18. Presents tools for child death review teams, state program information, and child mortality data by state.
  
  
• National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center. A wealth of resources for health and social services professionals, including professionals who work on SIDS/ID issues, first responders, and child care providers, as well as for families about risk reduction and bereavement support 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 bibliographies, statistics, Spanish-language materials, a multimedia collection, a resource database, journal article summaries, and a training toolkit. The center also presents an archive for the Association of SIDS and Infant Mortality Programs (ASIP) and Association of Maternal and Child Health Programs (AMCHP) webinar series designed to strengthen services related to SUID, SIDS, safe sleep environments for infants, and bereavement support.
  
  Also see the MCH Alert and the center's resources about safe sleep.
  
  
• Office of Minority Health: Infant Health. Links to news, articles, statistics, educational materials, and websites about infant mortality among racial and ethnic groups. Recent resources and initiatives include
  
  A Healthy Baby Begins with You. 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 aspect of the campaign, the Preconception Peer Educators (PPE) Program, which is designed to educate college students about preconception health and care and to train them to serve as ambassadors for their peers who are not attending college.
  
  A Healthy Baby Begins with Two! Minority Fathers Fight Infant Mortality. (2010). This online toolkit presents materials for organizations, students, and the media to raise awareness about infant mortality.
  
  National Plan for Action: Changing Outcomes—Achieving Health Equity (February 2010).
  

Additional Electronic Resources

• Haines MR. 2010. Inequality and Infant and Childhood Mortality in the United States in the Twentieth Century. Cambridge, MA: National Bureau of Economic Research (NBER). This paper examines trends in the United States during the 20th century using infant and childhood mortality as a social indicator of inequality.
  
  
• Harrison E, Partelow J, Grason H. 2009. Environmental Toxicants and Maternal and Child Health: An Emerging Public Health Challenge. Baltimore, MD. Women’s and Children’s Health Policy Center, Johns Hopkins Bloomberg School of Public Health. This issue brief addresses the potential impact of major environmental toxicants on fetal, infant, and child health, including miscarriages, low birthweight, preterm birth, and birth defects. The brief outlines the federal public policy response, presents the challenges for public health professionals in identifying and addressing women's exposure to environmental toxicants, and suggests strategies for collaboration, education, and surveillance.
  
  
• 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.
  
  
• Task Force on Sudden Infant Death Syndrome. (2005, 2009 reaffirmed). The Changing Concept of Sudden Infant Death Syndrome: Diagnostic Coding Shifts, Controversies Regarding the Sleeping Environment, and New Variables to Consider in Reducing Risk. Elk Grove Village, IL: American Academy of Pediatrics (AAP). This policy statement reviews the evidence associated with SIDS risk and makes recommendations for risk reduction.
  
  
• United Nations Children's Fund (UNICEF). 2009. The State of the World's Children Special Edition: Celebrating 20 Years of the Convention on the Rights of the Child. New York, NY: United Nations Children's Fund (UNICEF). This report commemorates the 20th anniversary of the Convention on the Rights of the Child, examines progress achieved worldwide on child well-being, outlines challenges remaining, and recommends actions for the next 20 years. Accompanying the report are statistical tables with infant mortality rates by country for 1990 and 2008 and neonatal mortality rates by country for 2004.
  
  
• University of Illinois at Chicago (UIC) Maternal and Child Health Program and the UIC Mid-America Public Health Training Center. 2010. Infant Mortality and Racism Action Learning Collaborative: Community Recommendations For Reducing Racial Disparities in Infant Mortality. Chicago, IL: University of Illinois at Chicago. This blog entry describes and links to a presentation about concept mapping, an approach to better understand how communities can decrease racial disparities in infant mortality.
  

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). 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).
  
  
• Healthcare Cost and Utilization Project (HCUP): HCUPnet. Health statistics and information on hospital inpatient and emergency department utilization at the national, regional, and state levels, including use of hospitals by children. To identify data about hospital use related to perinatal loss, select National Statistics on All Stays or State Statistics on All Stays. Select Researcher, medical professional. Under type of query, select Statistics on specific diagnoses or procedures. Select a year (e.g., 2008). Select Diagnoses grouped by Clinical Classifications Software (CCS). Select Principal diagnosis. Under the field, Browse all CCS categories, select 11 Complications of Pregnancy, Childbirth, and the Puerperium and 15 Certain Conditions Originating in the Perinatal Period. Hold the control key down and click to make multiple selections. Click on Next. Select the outcomes and measures of interest (e.g., Number of discharges) and click on Next. Select patient and hospital characteristics (e.g., All patients in all hospitals) and click on Next. View your results. HCUP is an initiative of the Agency for Healthcare Research and Quality (AHRQ).
  
  
• Health Data Interactive. 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 infants are presented. HDI is a service of the National Center for Health Statistics (NCHS).
  
  
• KIDS COUNT Data Center. 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. 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. Maternal and infant health-related data at the national, state, county, and city level. Topics include the timing and frequency of prenatal care, preterm birth, low-birthweight infants, 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 (MOD).
  
  
• Pregnancy Risk Assessment Monitoring System (PRAMS). 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.
  
  
• statehealthfacts.org. State-level data on more than 700 health topics. View individual state profiles, or compare data for all states by category. For data about low birthweight and prematurity, click on the Health Status category, and select one of several subcategories under Births. For infant mortality data, click on the Health Status category and select one of several subcategories under Infants. This system is provided by the Kaiser Family Foundation.
  
  
• Title V Information System (TVIS). 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 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. 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), the National Center for Health Statistics (NCHS), the United Nations Children's Fund (UNICEF) report, and the National Birth Defects Prevention Network (NBDPN).
  

Literature and Research Databases

• ClinicalTrials.gov. 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. Abstracts for 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). 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 Go to get your results. Conduct another search by typing "pregnancy loss" OR miscarriage OR stillbirth in the search box. Click on Go to get your results. DARE is produced and maintained by the Centre for Reviews and Dissemination at the University of York.
  
  
• MCH Library at the National Center for Education in Maternal and Child Health (NCEMCH), Georgetown University. 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
  
  MCHLine®. Online catalog of materials in the MCH 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.
  
  Healthy Start Collection Database. 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.
  
  The MCH Library also offers organizations and programs databases. Also see the library's newsletter, MCH Alert: Tomorrow's Policy Today and the resource brief, Home Visiting.
  
  
• National Guideline Clearinghouse (NGC). 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 Go to get your results. Conduct another search by entering "pregnancy loss" OR miscarriage OR stillbirth in the Search field. Click on Go to get your results. The database is an initiative of the Agency for Healthcare Research and Quality (AHRQ).
  
  
• National Institutes of Health (NIH) Research Portfolio Online Reporting Tool (RePORT): RePORTER. Information about reports, data, and analyses of NIH research activities, including information on NIH expenditures and the results of NIH-supported research. To identify information on the topic, enter the search phrase infant mortality OR sudden infant death syndrome and click on Submit Query to get your results. Conduct another search by entering the search phrase, pregnancy loss OR stillbirth OR miscarriage. Click on Submit Query to get your results. Narrow your searches by selecting a state or adding terms to other search fields.
  
  
• National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center: A–Z Topic Index. Links to electronic resources collected from national, state, and local SIDS/Infant Death programs, as well as perinatal, stillbirth, maternal and child health, and bereavement organizations. The resources include fact sheets, brochures, booklets, posters, order forms, foreign-language materials, and multimedia formats.
  
  
• Native Health Database. 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. Over 20 million citations for biomedical articles from MEDLINE and life science journals. Citations may include links to full-text articles from PubMed Central or publisher websites. To identify citations on the topic, enter the term infant mortality OR sudden infant death 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

• Community Pediatrics Grants Database. Archive of community pediatrics grant projects. Identify projects by entering the term infant mortality in the Keyword Search field. Click on Keyword Submit to get your results. Conduct another search by selecting Topic: SIDS. Click on Advanced Submit to get your results. The database is a service of the American Academy of Pediatrics (AAP).
  
  
• Discretionary Grant Information System (DGIS). Information 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-funded 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). Information about ongoing health services research and public health projects. To identify projects, enter infant mortality OR sudden infant death 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).
  
  
• MCH Library at the National Center for Education in Maternal and Child Health (NCEMCH), Georgetown University. Databases to identify organizations and programs that address infant mortality and pregnancy loss:
  
  MCH Organizations Database. Information on 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. 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. 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.
  

News and Commentary

• MCH 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 are 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 infant'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. To access the latest issues of the newsletter, click on Publications and Resources and then Newsletters in the top navigation bar.
  
  Healthy from the Start. This blog offers updates about NHSA work and news from the MCH community about efforts to eliminate infant mortality, low birthweight, and racial disparities.
  
  
• 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 professionals, physicians, nurses, and researchers encourages participants to share information, promote policy and legislative changes, and foster partnerships and communication.
  
  
• Also see the CDC Birth Defects Surveillance Listserv and the Consumer Product Safety Commission (CPSC).
  

Resources for Families

• See the MCH Library family resource brief, Infant Mortality and Pregnancy Loss. The brief presents links to care, services, and support and websites for expectant and new parents about ways to help their infants survive and thrive, pregnancy loss, losing an infant, and bereavement.
  
  
• Note: The resources in the following section of the knowledge path present resources for families and professionals about factors that contribute to infant mortality and pregnancy loss: birth defects, injuries, low birthweight and prematurity, preconception and pregnancy, and sleep environment.
  

Resources on Factors That Contribute to Infant Mortality and Pregnancy Loss

• Birth Defects
• Injuries
• Low Birthweight and Prematurity
• Preconception and Pregnancy
• Sleep Environment

Birth Defects

• Centers for Disease Control and Prevention (CDC): National Center on Birth Defects and Developmental Disabilities (NCBDDD): Birth Defects. Program information and publications about promoting optimal fetal and infant development and preventing birth defects, the leading cause of infant mortality. NCBDDD's activities include surveillance, research, technical assistance to states, and public education. CDC also offers
  
  CDC Birth Defects Surveillance Listserv. This electronic discussion group aims to enhance communication among public health professionals working at the state level in birth defects surveillance and prevention.
  
  
• March of Dimes (MOD): Birth Defects and Genetic Conditions. A collection of fact sheets about birth defects and genetic conditions and information about newborn screening tests. Also see MOD's database, PeriStats.
  
  
• National Birth Defects Prevention Network (NBDPN). Profiles containing state and national data on the number of cases and prevalence rates for 12 conditions and information about each state's surveillance system and how birth defects data are used in each state. Also includes guidelines for conducting birth defects surveillance and educational materials for National Birth Defects Prevention Month. NBDPN is a national network of state and population-based programs for birth defects surveillance, research, and prevention.
  
  
• Also see the MCH Library resource brief Genetics.
  

Injuries

• Consumer Product Safety Commission (CPSC). Safety tips, checklists, and other materials in English and Spanish about potentially hazardous consumer products including cribs, car seats, and toys for infants. Offers several electronic alert services in English and Spanish for consumer product recalls and safety news, including those products used in homes and communities that are potentially hazardous for infants. CPSC also produces a blog about safety and issues consumer product recalls via Twitter, mobile phone applications, RSS (Really Simple Syndication) feeds, and other mechanisms to automatically receive updates about new recalls and safety news. CPSC evaluates the safety of products sold to the public.
  
  See CPSC's Crib Information Center.
  
  
• Safe Kids USA. Safety tips, information about federal and state child safety laws, car seat inspection station contact information, and other resources for safety professionals, educators, and families about preventing unintentional injuries among infants, children, and adolescents. Safe Kids is a nationwide network of organizations working to prevent unintentional childhood injury, a leading cause of death and disability for children ages 14 and under.
  
  
• See the National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center list of resources about shaken baby syndrome (abusive head trauma).
  
  
• Also see the MCH Library resource brief Child Safety and Injury Prevention.
  

Low Birthweight and Prematurity

• Baby First: Clinical Educational and Parental Support for Premature Infants. Research papers, video clips, clinical guidelines, and presentations for neonatal care professionals. Also offers information for families about prematurity, the neonatal intensive care unit (NICU) experience, and the transition home after the NICU. Includes parent stories and a glossary of NICU terms. Baby First is presented by NICUniversity.org, a source for Web-based CE tools and information for neonatologists and other members of the neonatology health care team.
  
  
• March of Dimes: Prematurity. Information in English and Spanish about prematurity for health professionals, women who are pregnant or are considering becoming pregnant, and families with infants in the 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, CE resources, 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. A collection of fact sheets includes one about low-birthweight infants. Recent resources include
  
  Premature Birth Report Cards. A collection of report cards for each state, the District of Columbia, and Puerto Rico with preterm birthrates and statistics about contributing factors.
  
  Symposium on Quality Improvement to Prevent Prematurity. (2009). [Webcast].
  
  
• PreemieCare. Information and support to families of infants born preterm. Includes contact information for local support groups.
  
  
• Promising Practices Network (PPN) on Children, Families and Communities: Low Birth Weight/Prematurity Resources and Tools. An issue brief and links to research-based resources about low birthweight and prematurity.
  
  
• Surgeon General's Conference on the Prevention of Preterm Birth. 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 prevention.
  
  
• 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.
  
  
• National Institute for Health Care Management Research and Educational Foundation. 2010. Preventing Prematurity: Opportunities for Health Plans. Washington, DC: National Institute for Health Care Management Research and Educational Foundation. This webinar brought together members of the health insurance industry and the MCH community to discuss innovative programs and strategies to reduce preterm births and their emotional and financial cost.
  
  
• See the National Center for Health Statistics (NCHS) data briefs, Are Preterm Births on the Decline in the United States? (2010) and FastStats: Birthweight and Gestation. (2009).
  
  
• Also see the MCH Library bibliography Prematurity.
  
  
• Note: Several databases offer data about low birthweight and preterm birth.
  

Preconception and Pregnancy

• See the MCH Library knowledge path Preconception and Pregnancy.
  

Sleep Environment

• American Academy of Pediatrics (AAP): Sleep Issues. Resources for families, health professionals, and child care providers about creating a safe sleep environment for infants and reducing the risk for SIDS. Initiatives include
  
  Healthy Child Care America Back to Sleep Campaign. Brochures for parents and child care providers in English and Spanish and training and education materials for health professionals about reducing the incidence of SIDS in child care settings. Recent materials include
  
  
  • Reducing the Risk of SIDS in Child Care. (2010). [Online training module for child care providers, health care professionals, and families].
    
    
  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].
  
  SIDS and Other Sleep-Related Infant Deaths: Expansion of Recommendations for a Safe Infant Sleep Environment. (2011). [Policy statement, Technical report].
  
  
• Back to Sleep Campaign. 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, an online curriculum for nurses, 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).
  
  
• Consumer Product Safety Commission: Crib Information Center. Product safety news, recalls, and regulations and standards in English and Spanish for cribs, bassinets and play yards. Recent resources include
  
  Safe Sleep for Babies. (2010). [Poster]. Also available in Spanish.
  
  
• First Candle. Resources for health professionals, child care providers, and expectant and new parents about safe sleep environments. Initiatives include
  
  Bedtime Basics: A National Infant Sleep Campaign. Information and materials for this educational outreach campaign to help prevent infant deaths caused by unsafe sleep practices. Recent resources include
  
  
  • Safe Sleep. (2010). [Video clip]. Available in English and Spanish.
    
    
  Model Behavior: The Most Important Modeling Job of Your Life. Information and materials for this national professional education campaign that urges nurses in NICU and well-baby nurseries to incorporate safe sleep policies into their existing protocols.
  
  RX: Infant Safe Sleep Program. Information about this training and education program for pharmacists to enlist their help in promoting safe sleep messages to parents and caregivers.
  
  
• National Resource Center for Health and Safety in Child Care and Early Education (NRC). Each state's child care licensure regulations that includes those involving safe sleep environments for infants. Recent publications include
  
  Caring for Our Children: National Health and Safety Performance Standards—Guidelines for Out-of-Home Child Care, 3rd ed. (2011). These national guidelines address safe sleep practices. The guidelines were developed by the American Academy of Pediatrics (AAP), American Public Health Association (APHA), and National Resource Center for Health and Safety in Child Care in consultation with panels of experts.
  
  
• National Sudden and Unexpected Infant/Child Death and Pregnancy Loss Resource Center: Safe Sleep. Brochures for families and a bibliography of additional materials about creating a safe sleep environment for infants. Recent materials include
  
  Helping Baby "Back to Sleep" (rev. ed.). (2009). [Brochure]. Also available in Spanish.
  
  Safe Sleep for Your Baby Around the Clock: Birth to 12 Months (rev. ed.). (2009). [Brochure].
  
  See the center's collection of multimedia resources for PowerPoint presentations and video clips about safe sleep environments for infants.
  
  Also view the center's guide, Child Care and SIDS, which contains a selection of resources for families and professionals on topics that include infant sleep position.
  

Infant Mortality and Pregnancy Loss: Knowledge Path, 6th ed. (November 2010). (Updated: November 2011).
Author: Susan Brune Lorenzo, M.L.S., MCH Library.
Contributors: Jeanne Anastasi, M.A., Beth DeFrancis, M.L.S., and Tracy Lopez, M.S.L.S., National Sudden and Unexpected Infant/Child Death & Pregnancy Loss Resource Center.
Reviewers: Suzanne Bronheim, Ph. D., National Center for Cultural Competence; Stacey D. Cunningham, M.S.W., M.P.H., National Healthy Start Association; Hanan Kallash, R.N., M.S., First Candle; Olivia K. Pickett, M.A., M.L.S., MCH Library.
Editor: Ruth Barzel, M.A., MCH Library.