Young Children Exposed Prenatally to Substances and Their Families
This page developed in partnership with the IDEA Infant and Toddler Coordinators Association (ITCA).
Two broad types of prenatal substances are most prevalent: prenatal exposure to alcohol, including the diagnosis of Fetal Alcohol Spectrum Disorders and prenatally affected by illegal substance abuse or having withdrawal symptoms resulting from prenatal drug exposure including the diagnoses of Neonatal Abstinence Syndrome, opioid exposure, to name a few.
Research conducted by the Center for Disease Control (CDC) in 2015 indicates that 1 out of 10 pregnant women aged 18–44 reported using alcohol and 1 out of 33 pregnant women reported binge drinking within the last 30 days.
CDC research indicates that the national rate for opioid use disorder has more than quadrupled between 1999-2014. The research acknowledged that the prevalence rate is likely underreported based on several factors.
With rising rates of substance use disorder in women of child-bearing age, state and local early intervention systems seek knowledge regarding identifying the prevalence of infants and toddlers prenatally exposed to substances, and the resources and supports needed to promote positive outcomes for these infants and their families. ECTA Center and ITCA have partnered to provide key research, policy, guidance and state examples, and evidence-based practices for supporting young children exposed prenatally to substances and their families.
Federal Laws and Guidance
The Child Welfare Gateway Information, Children's Bureau, Department of Health and Human Services has a searchable database of state laws related to child abuse and neglect that includes state definitions related to illegal substance use and required reporting to child protective services.
Definitions of Child Abuse and Neglect: State Statutes (2016) provides a brief descriptive overview.
American Academy of Pediatrics (AAP)
- Clinical Report: Marijuana Use During Pregnancy and Breastfeeding: Implications for Neonatal and Childhood Outcomes (2018)
- Clinical Report: The Role of Integrated Care in a Medical Home for Patients With a Fetal Alcohol Spectrum Disorder (2018)
- Clinical Report: Families Affected By Parental Substance Use (2016)
- Policy Statement: A Public Health Response to Opioid Use in Pregnancy (2017)
- Technical Report: Prenatal Substance Abuse: Short- and Long-term Effects on the Exposed Fetus (2013)
- Lisonkova, S., et al (2019). Neonatal Abstinence Syndrome and Associated Neonatal and Maternal Mortality and Morbidity. Pediatrics, 144(2). Retreived from https://pediatrics.aappublications.org/content/early/2019/07/10/peds.2018-3664.abstract or https://www.ncbi.nlm.nih.gov/pubmed/31300529
- Fill, M.A., et al (2018). Educational Disabilities Among Children Born With Neonatal Abstinence Syndrome. Pediatrics, 142(3). Retreived from https://www.ncbi.nlm.nih.gov/pubmed/30166364
- Peacock-Chambers, E., et al (2020). Engagement in Early Intervention Services Among Mothers in Recovery From Opioid Use Disorders. Pediatrics, 145(2). Retreived from https://pediatrics.aappublications.org/content/145/2/e20191957
Center for Disease Control
Fetal Alcohol Spectrum Disorders (FASD) is the term that describes a range of effects that can occur in young children who are exposed to alcohol during the prenatal period. Effects may include physical, behavioral, and/or learning or developmental disabilities. Terms that are used diagnose young children with the FASD are:
- Fetal Alcohol Syndrome (FAS)
- Partial Fetal Alcohol Syndrome (PFAS)
- Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE)
- Alcohol-Related Neurodevelopmental Disorder (ARND)
CDC studies have estimated rates of FAS, 0.2 to 1.5 infants for every 1,000 live births in certain areas of the United States. Analysis of medical and other records indicate that FAS identified 0.2 to 1.5 infants with FAS for every 1,000 live births in certain areas of the United States. Other studies using in-person assessments of children in the first grade indicate higher estimates: 6 to 9 out of 1,000 children.
Research and fact sheets from CDC include:
- Substance Use During Pregnancy page on CDC web site
- The US Opioid Crisis: Addressing Maternal and Infant Health
- Pregnancy and Opioids Factsheet
- Alcohol Fact Sheet
Morbidity and Mortality Weekly Reports (MMWR) provides timely and accurate scientific information on a broad range of public health information and recommendations. See the following MMWR for information related to this topic:
- Evaluation of State-Mandated Reporting of Neonatal Abstinence Syndrome: Six States, 2013–2017. (2019)
- Leveraging Existing Birth Defects Surveillance Infrastructure to Build Neonatal Abstinence Syndrome Surveillance Systems: Illinois, New Mexico, and Vermont, 2015–2016. (2019)
- Opioid Use Disorder Documented at Delivery Hospitalization: United States, 1999–2014. (2018)
CDC and the American Academy of Pediatrics have also published the following papers that may be of interest:
- Incidence and Costs of Neonatal Abstinence Syndrome Among Infants With Medicaid: 2004–2014
- Improving Care for Neonatal Abstinence Syndrome
Other Research Sources
- Merhar, S.L., et al (2018). Retrospective review of neurodevelopmental outcomes in infants treated for neonatal abstinence syndrome. Journal of Perinatology, 38, 587-592. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5999528/
- Crowley, D.M., Connell, C.M., Jones, D; and Donovan,M.W. (2019) Considering the Child Welfare System Burden From Opioid Misuse: Research Priorities for Estimating Public Costs. The American Journal of Managed Care Supplement, 25, S256-S263. Retrieved from https://www.ajmc.com/journals/supplement/2019/deaths-dollars-diverted-resources-opioid-epidemic/considering-child-welfare-system-burden-opioid-misuse-research-priorities-estimating-public-costs?p=1
- Morgan, P. L., Wang, Y. (2019) The Opioid Epidemic, Neonatal Abstinence Syndrome, and Estimated Costs for Special Education Services. The American Journal of Managed Care Supplement, 25, S264-S269. Retrieved from https://www.ajmc.com/journals/supplement/2019/deaths-dollars-diverted-resources-opioid-epidemic/opioid-epidemic-neonatal-abstinence-syndrome-estimated-costs-special-education-services?p=2
Policy and Guidance
The Children's Bureau
States are required by the CAPTA legislation to have policies and procedures for reporting substance-exposed newborns to child protective services, to assess the need for intervention, and establish a plan of care. Strategies used in the States to address prenatal substance exposure, information about the various effects of the most common drugs involved with prenatal exposure are highlighted.
Child Maltreatment 2018 (2020)
This annual report presents national data about child abuse and neglect reported to child protective services agencies in the United States. Chapter 7 focuses on infants with prenatal substance exposure (IPSE) (see pages 88–91 and Tables 7-5 through 7-9 on pages 97-101).
CAPTA requests a count of infants with prenatal substance exposure. To be included in the count, a child must meet the following conditions as defined by NCANDS data elements:
- The child must be in the age range of birth to 1 year old.
- Referred to CPS by a health care provider.
- Born with and identified as being affected by substance abuse or withdrawal symptoms. The child must have the alcohol abuse, drug abuse, or both alcohol and drug abuse child risk factors.
The legislation does not require the infants to be considered victims of maltreatment solely based on the substance exposure, and drug abuse includes legal and illegal drugs (including alcohol exposure).
Maternal and Child Health Bureau
HRSA'S Home Visiting Program: Supporting Families Impacted by Opioid Use and Neonatal Abstinence Syndrome (2018)
This document provides essential information about the opioid epidemic, opioid use disorder (OUD), and neonatal abstinence syndrome (NAS) including: relevant research; strategies for MIECHV awardees and their state partners (e.g. early childhood, public health, and substance misuse and mental health treatment) and promising efforts four states, Maine, Colorado, West Virginia, and Massachusetts.
National Academy of State Health Policy (NASHP)
The National Academy of State Health Policy (NASHP) is a nonpartisan forum for policymakers in states to improve challenges in health policy.
- State Options for Promoting Recovery among Pregnant and Parenting Women with Opioid or Substance Use Disorder (2018)
- State Strategies to Meet the Needs of Young Children and Families Affected by the Opiod Crisis (2018)
- Resources to Help States Improve Integrated Care for Pregnant and Parenting Women includes information for states using the Maternal Opioid Misuse (MOM) model and others models to improve pregnant and parenting women access to comprehensive and coordinated care, including payment and care delivery models for Medicaid eligible women
Office of Head Start
Head Start and the Early Childhood Learning and Knowledge Center have developed a number of resources around Substance Use Disorder and Recovery, including the following:
- Head Start Takes Action on Substance Use Disorder
- Head Start and the Opioid Crisis: Video Series
- Head Start Supports Families in Recovery
- Substance Use Disorders: Understanding the Basics
- Intervening Early: Substance Use Disorders During Pregnancy
- Talking with Families: Screening and Consultation
- Promoting Resilience: Preventing Substance Use Disorders
- The Impact of Substance Use on Children and Families Webinar Series
Office of Special Education Programs
Topical Issue Brief: Intervention IDEAs for Infants, Toddlers, Children, and Youth Impacted by Fetal Alcohol Spectrum Disorders (FASDs) (2017)
This document outlines the different FASDs, discusses prevention, and provides behavioral and academic interventions for families, infants and preschool-aged children.
Topical Issue Brief: Intervention IDEAs for Infants, Toddlers, Children, and Youth Impacted by Opioids (2016)
This document provides an overview of research, risk factors, potential symptoms in young children and school-aged children, and provides evidence based resources for each age group.
Substance Abuse and Mental Health Services Administration (SAMHSA)
The National Center on Substance Abuse and Child Welfare (NCSACW) is jointly funded by SAMHSA and the Children's Bureau. Some resources of interest include:
- Perinatal Substance Exposure
- Summary 2017 Policy Academy: Improving Outcomes for Pregnant Women and Postpartum Women with Opioid Use Disorders and Their Infants, Families and Caregivers (2017)
This center hosts a large collection of resources on fetal alcohol spectrum disorders (FASD).
Partnering to Support Families Affected by Opioid and Other Substance Use Disorders
This project focuses on children birth to 8, to promote children entering school with the skills they need, social, emotional, cognitive and physical skills, collaboration among child-serving organizations, and integrate physical and behavioral health services and supports. Their website includes a page on opioid use.
National Institute for Children's Health Quality
National Institute for Children's Health Quality (NICHQ) is a nonprofit that focuses on improving children's health outcomes through partnerships that build sustainability.
NICHQ provides support for the National Network of Perinatal Quality Collaboratives, funded by Centers for Disease Control and provides resources on the effects of the opioid epidemic on maternal health.
Perinatal Quality Collaboratives (PQCs), with joint funding from CDC and March of Dimes, are state or multi-state networks of multidisciplinary teams, working to improve outcomes for maternal and infant health. PQCs do that by advancing evidence-informed clinical practices and processes using quality improvement (QI) principles to address gaps in care. PCQs work with clinical teams, experts and stakeholders, including patients and families, to spread best practices, reduce variation and optimize resources to improve perinatal care and outcomes. The goal of PQCs is to achieve improvements in population-level outcomes in maternal and infant health. PQCs current areas of focus are:
- Reduce preterm births
- Reduce severe pregnancy complications associated with high blood pressure and hemorrhage
- Improve identification of and care for infants with neonatal abstinence syndrome
- Reduce racial/ethnic and geographic disparities
- Reduce cesarean births among low-risk pregnant women
Substance Exposed Newborns and Part C: New Challenges and New Opportunities
This conference session from the 2018 Improving Data Improving Outcomes Conference features examples from Indiana, Massachusetts, and West Virginia.
The use of opioids in the general population has reached epidemic proportions. There have been many media reports related to infants prenatally exposed to opioids as well as other legal and illicit substances. States struggle with the resources and supports that are needed to promote positive outcomes for infants. Coordinators from three states at the epicenter of the opioid crisis will discuss the challenges they have encountered in addressing this population.
- Presentation File
- IN Discharge Readiness Checklist
- IN Primary Care Provider Letter (Revised)
- MA EI Position Statement
Illinois Department of Human Services
Prenatal Opiate Exposure: Impact on Early Childhood Learning and Behavior (2018)
This Bureau of Early Intervention webinar is presented by Dr. Ira Chasnoff):
Pennsylvania Bureau of Early Intervention Services, Office of Child Development and Early Learning, Department of Education and Department of Human Services
Keep Kids Safe: Plans of Safe Care presents resources related to plans of safe care for infants who are affected by prenatal substance exposure. It includes:
- Pennsylvania Plan of Safe Care Guidance
- Fast Facts: Federal and State Legislation
- Fast Facts: 3 Reasons Why Good Infant Mental Health Matters
Plans of Safe Care Webinar
Texas' Office for Disability Prevention for Children
FASD-related flyer that includes information on how to make a referral to the Early Intervention program. Links to both the English and Spanish flyers below: