Infant Mortality and Pregnancy Loss

Professional Resource Guide

Introduction

This professional resource guide about infant mortality and pregnancy loss has been compiled by the MCH Digital 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 professional resource guide for health and social services professionals, policymakers, researchers, child care providers, and families will be updated periodically.

Overview

See Report of the Secretary's Advisory Committee on Infant Mortality (SACIM): Recommendations for Department of Health and Human Services Action and Framework for a National Strategy (2013) for a plan to reduce infant mortality in the United States. The report includes background on the problem of infant mortality in the United States, principles for a national strategy, and details related to six strategic directions for reducing infant mortality.

See the set of definitions presented by the Sudden Unexpected Infant Death (SUID) and Sudden Infant Death Syndrome (SIDS) Gateway, which describes the terms often associated with infant mortality and pregnancy loss.

See the set of statistics about infant mortality and pregnancy loss from the Sudden Unexpected Infant Death (SUID) and Sudden Infant Death Syndrome (SIDS) Gateway.

Resources for Professionals

Websites

• Centers for Disease Control and Prevention (CDC). Resources and initiatives aimed at reducing infant mortality and pregnancy loss include
  
  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.
  
  Public Health Grand Rounds: Public Health Approaches to Reducing U.S. Infant Mortality. (2012). [Webinar].
  
  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 the National Center for Health Statistics (NCHS), 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).
  
  
• Collaborative Improvement and Innovation Network to Reduce Infant Mortality (CoIIN). A public-private partnership developed by the Maternal and Child Health Bureau to reduce infant mortality and improve birth outcomes. Participants learn from one another and national experts, share best practices and lessons learned, and track progress toward shared benchmarks. Promoting infant safe sleep practices is one of six priorities selected by CoIIN participants.
  
  
• 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.
  
  Also see the Safe to Sleep Campaign.
  
  
• First Candle. Program and legislative information, training, and educational tools for health and social services professionals about infant mortality and pregnancy loss. Provides a hotline in English and Spanish and resources 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.
  
  
• 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.
  
  
• 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, and the Collaborative Improvement and Innovation Network (CoIIN) to Reduce Infant Mortality, a public-private partnership to facilitate collaborative learning and adoption of proven quality improvement principles and practices to reduce infant mortality and improve birth outcomes.
  
  
• The National Center for Fatality Review and Prevention (NCFRP). NCFRP serves as the national resource and data center for Fetal and Infant Mortality Review and Child Death Review. Contains 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 Center for Cultural Competence (NCCC). 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.
  
  
• 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.
  
  
• Office of Minority Health: Infant Health and Mortality. Statistics on infant health and mortality for minority population. Initiatives include
  
  A Healthy Baby Begins with You. As phase I of the Office of Minority Health’s campaign to raise awareness about infant mortality with an emphasis on the African American community this fact sheet includes a list of risk factors that contribute to infant mortality and a collection of tips for a healthy start for mothers and babies. Phase II 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.
  
  
• Sudden Unexpected Infant Death (SUID) and Sudden Infant Death Syndrome (SIDS) Gateway. 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. Resources include bibliographies, statistics, Spanish-language materials, a multimedia collection, a resource database, journal article summaries, and a training toolkit. Presented by the MCH Digital Library at Georgetown University.
  
  

Journal Articles, Reports, Briefs, Guides, and Multimedia Resources

• PubMed. Citations and abstracts for biomedical articles indexed by the National Library of Medicine (NLM), with links to full-text articles when available.
  
  
• Sudden Unexpected Infant Death (SUID) and Sudden Infant Death Syndrome (SIDS) Gateway: SUID/SIDS Database. Search the database to find reports, toolkits, and other resources for states, communities, professionals, and families to reduce SUID/SIDS, promote healthy outcomes, and cope with grief when losses occur.
  
  
• See the MCH Digital Library's Infant Mortality Toolkit: Resources for a Public Health Approach (2013).
  
  
• Also see the MCH Digital Library's resource brief, Maternal and Child Health Literature and Research Databases.
  

Data and Statistics

• Centers for Disease Control and Prevention (CDC): 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.
  
  
• Centers for Disease Control and Prevention (CDC): Pregnancy Risk Assessment Monitoring System (PRAMS). State-specific, population-based data on maternal attitudes and experiences before, during, and immediately following pregnancy.
  
  
• What Do We Know About Infant Mortality in the U.S. and Comparable Countries? (2019). A series of graphical representations of statistics related to infant mortality across U.S. states, race/ethnicities, age groups, causes of death, and comparable countries.
  
  
• See the Sudden Unexpected Infant Death (SUID) and Sudden Infant Death Syndrome (SIDS) Gateway's resource brief, Statistics for infant mortality and SIDS rates in the United States and internationally.
  
  
• Also see the MCH Digital Library's resource brief, Maternal and Child Health Data and Statistics.
  

News and Commentary

• National Conference of State Legislatures: Preventing Infant and Maternal Mortality: State Policy Options. Presents factors contributing to infant and maternal death, state-level solutions and policy options, and examples of how states are using data to identify opportunities for interventions.
  
  
• National Fetal and Infant Mortality Review Program (NFIMR) Listserv. This listserv reaches state and local FIMR leaders, coordinators, and team members. To gain access to it contact NCFRP.
  
  
• National Healthy Mothers, Healthy Babies Coalition (HMHB).
  
  

  Newsletters: A collection of curated newsletters that offer science-based information a variety of topics pertaining to children’s health from birth to age 3, as well as updates from Zero to Three’s policy team.

• National Healthy Start Association (NHSA).
  
  Getting Off to a Healthy Start (Newsletter). 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 NHSA Publications from the Resources tab and then scroll to the bottom of the page.
  
  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.
  
  
• Also see the Consumer Product Safety Commission (CPSC).
  

Resources for Families

• See the MCH Digital 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 professional resource guide 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 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.
  
  
• March of Dimes (MOD): Birth Defects. A collection of fact sheets about birth defects and genetic conditions. 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 Digital Library resource brief Genetics.
  

Injuries

• Consumer Product Safety Commission (CPSC). (Spanish portal) 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 Worldwide. 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.
  
  
• Also see the MCH Digital Library resource brief Child Safety and Injury Prevention.
  

Low Birthweight and Prematurity

• March of Dimes: Preterm Labor & Premature Birth. Information in English and Spanish about prematurity for health professionals and women who are pregnant or are considering becoming pregnant. Presents patient-education information about preventing premature delivery and caring for a premature infant. Also includes a preterm-labor-assessment toolkit, prematurity, statistics and research information, CE resources, 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.
  
  March of Dimes: The Newborn Intensive Care Unit (NICU). Information in English and Spanish about prematurity for health professionals and families with infants in the NICU. Presents patient-education information about parenting in the NICU, coping with the NICU experience, and caring for a premature infant. Also includes an online community for families to share their experiences with prematurity, birth defects, or loss.
  
  
• 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.
  
  
• Strong Start for Mothers and Newborns. Information about this initiative to reduce the risk of significant complications and long-term health problems for pregnant women and infants. Components include a public-private partnership to reduce early elective deliveries and a funding opportunity for testing new approaches to prenatal care. Strong Start is a joint effort between the Centers for Medicare and Medicaid Services (CMS), the Health Resources and Services Administration (HRSA), the Administration for Children and Families (ACF), and organizations devoted to the health of mothers and newborns.
  
  
• 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.
  
  
• Also see the MCH Digital Library resource brief Prematurity and Preterm Birth
  

Sleep Environment

• American Academy of Pediatrics (AAP): Sleep. 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 Safe to Sleep Campaign. Training materials for early education and child care providers, and resources and research articles for parents and health professionals about reducing the incidence of SIDS in child care settings
  
  SIDS and Other Sleep-Related Infant Deaths: Expansion of Recommendations for a Safe Infant Sleep Environment. (2011). [Policy statement, Technical report].
  
  
• Association of State and Territorial Health Officials (ASTHO): Safe Sleep. Resources and promising state practices and programs to reduce the rates of SUID/SIDS and sleep-related infant death.
  
  Safe infant sleep. (2013). This fact sheet includes strategies for state and territorial health agencies to reduce the rates of SIDS and other sleep-related infant deaths. Topics include laws and regulations, Cribs for Kids, safe sleep campaigns, WIC messaging, and public health recommendations.
  
  Safe sleep roundtable report. (2014). This report includes a summary of best practices and recommendations and next steps for federal partners, state health departments, community organizations, and others.
  
  
• Consumer Product Safety Commission: Crib Information Center. Product safety information, recalls, and regulations and standards in English and Spanish for cribs, bassinets, and play yards.
  
  
• First Candle. Resources for health professionals, child care providers, and expectant and new parents about safe sleep environments. Initiatives include
  
  Bedtime Basics: Safe Sleep Saves Lives! Materials to help prevent infant deaths caused by unsafe sleep practices. Recent resources include
  
  

  Safe Sleep Guardians. First Candle’s campaign to reduce the number of images of babies in unsafe sleep situations on social media and in ads. Contains guidelines for a safe sleep image and a call to bloggers, photographers, and companies to commit to only posting images of babies in safe sleep situations.

  Straight Talk for Infant Safe Sleep. A training program for community partners including nurses, OB/GYNs, doulas, social service agencies, childcare providers, and faith-based leaders to provide clear education around safe sleep recommendations, the cultural contexts that affect how communities view those recommendations, and how to improve communication skills to effectively engage with families across cultures.
  

• National Resource Center for Health and Safety in Child Care and Early Education (NRC). Each state's child care licensing and regulation information that includes those involving safe sleep environments for infants. Publications include
  
  Safe Sleep Practices and SIDS/Suffocation Risk Reduction. (2012). This compilation presents 27 health and safety standards on sleep safety from Caring for Our Children: National Health and Safety Performance Standards- Guidelines for Early Care and Education Programs, 3rd ed (2011). 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 and Early Education in consultation with panels of experts.
  
  
• Safe to Sleep Campaign®. National campaign aimed at health professionals, child care providers, and families about ways to reduce the risk for SIDS and other sleep-related causes of infant death. Includes outreach materials in English and Spanish and online curricula for nurses and pharmacists. Includes information about outreach activities in specific communities that is informed by research and experience. The Eunice Kennedy Shriver National Institute of Child Health and Human Development directs and manages the campaign with support from collaborating organizations.
  
  
• Sudden Unexpected Infant Death (SUID) and Sudden Infant Death Syndrome (SIDS) Gateway: Safe Sleep Environment. Resources for states, communities, health and social services professionals, child care providers, and families to reduce SUID and SIDS, promote healthy outcomes, and cope with grief when losses occur. Resources related to infant sleep environments include a resource page, research bibliographies, a resource database, a training toolkit, and the following:
  
  Infant safe sleep campaigns and materials. (2013).
  
  Resources to support AAP's policy statement on SIDS and other sleep-related infant deaths (Updated 2012).
  

Related MCH Digital Library Resources

• Community Services Locator: An Online Directory for Finding Community Services for Children and Families professional resource guide
• Home Visiting resource brief
• Infant Mortality Toolkit: Resources for a Public Health Approach
• Maternal Distress in the Perinatal Period and Child Outcomes professional resource guide
• Racial and Ethnic Disparities in Health professional resource guide
• Sudden Unexpected Infant Death (SUID) and Sudden Infant Death Syndrome (SIDS) Gateway

Infant Mortality and Pregnancy Loss: Professional Resource Guide, 6th ed. (November 2010). (Updated: November 2014, May 2020).

Author: Susan Brune Lorenzo, M.L.S., MCH Digital Library.
Contributors: Jeanne Anastasi, M.A., Beth DeFrancis, M.L.S., and Tracy Lopez, M.S.L.S., National SUID/SIDS 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 Digital Library.
Editor: Ruth Barzel, M.A., MCH Digital Library.