Preserving Families of Children in Child Welfare with Fetal Alcohol Spectrum Disorders: Challenges and Opportunities.

The mission of child welfare is to ensure children's safety, permanency, and well-being. It is also charged with preserving and strengthening families and with avoiding the removal of children who can be kept at home safely. This paper addresses some of the challenges in meeting these concurrent goals in work with children prenatally exposed to alcohol and their families. Current child welfare practices are unlikely to identify prenatal alcohol exposure or children with fetal alcohol spectrum disorders (FASD). Yet if this exposure is identified when families come into contact with child welfare, a jurisdiction's laws and safety and risk assessment processes may lead to unnecessary removal of children from their homes, particularly for Black and American Indian/Alaska Native families. Drawing from research and discourse in the field, strategies are described that could help the child welfare system care for children who may be impacted by FASD while preserving their families. A crucial strategy is partnering with key child and family service providers to identify and respond to FASD.

Exploring Child Welfare Practices to Care for Children with Prenatal Substance Exposure.

This article presents findings from a mixed-methods study exploring child welfare agency practices addressing children with prenatal substance exposure and their families. Data sources include: (a) interviews with 159 professionals in child welfare; (b) surveys with 271 professionals in child welfare; and (c) a systematic review of state and local child welfare documents guiding processes in the five states in the study sample. Findings from descriptive statistics of survey data, grounded theory analysis of interviews, and content analysis of documents suggest practices center on infants identified by hospitals as affected by prenatal substance exposure. Without practice guidance and access to treatment services, the needs of older children whose prenatal exposure to substances, including alcohol and other types of legal and illegal substances, is not recognized at birth may be overlooked.

Knowledge, Training, and Support Needs for Identification and Appropriate Care of Children with Prenatal Alcohol and Other Drug Exposures in the Child Welfare System.

Increased awareness of the conditions associated with prenatal substance exposure may enhance care delivery among professionals working in child welfare. The ways in which prenatal substance exposure intersects with child welfare are critically important, yet prenatal substance exposure knowledge is uneven among these professionals. Also, caregivers may lack information that prepares them to care for children with prenatal substance exposure, particularly children with prenatal alcohol exposure. This study explores what professionals working in child welfare and caregivers know about prenatal substance exposure and prenatal alcohol exposure and their training and support needs.

Child Welfare Policies and Practices Regarding Children with Prenatal Exposure to Alcohol and Other Drugs: An Exploratory Study.

Research indicates that there are more children with prenatal alcohol and other drug exposures in child welfare than in the general population. Using multiple forms of data from staff and caregivers from one urban agency, this exploratory study demonstrated opportunities to inform polices, practice, and data elements regarding this vulnerable group. Findings are discussed within the context of ensuring family preservation, equity and avoiding disproportional race/ethnicity within child welfare when identifying and caring for children with prenatal exposures.

Are Low-to-Moderate Average Alcohol Consumption and Isolated Episodes of Binge Drinking in Early Pregnancy Associated with Facial Features Related to Fetal Alcohol Syndrome in 5-Year-Old Children?

BACKGROUND: Fetal alcohol syndrome (FAS) typically is observed among individuals with high prenatal alcohol exposures (PAE), but exposure histories obtained in clinical diagnostic settings are often inaccurate. The present analysis used the Lifestyle During Pregnancy Study (LDPS) to assess the potential effects of low-to-moderate average weekly alcohol consumption and binge drinking in early pregnancy on facial features associated with FAS among children 5 years of age. METHODS: The analysis is a prospective follow-up study of 670 women and their children sampled from the LDPS cohort based on maternal alcohol consumption during pregnancy. The 4-Digit Code FAS Facial Photographic Analysis Software was used to measure the magnitude of expression of the 3 diagnostic facial features of FAS from standardized digital photographs. Logistic regression was used to estimate the odds of presenting with the FAS/partial fetal alcohol syndrome (PFAS) facial phenotypes relative to different patterns of prenatal alcohol exposure. RESULTS: Ten children presented with the FAS/PFAS facial phenotypes. None of the children sampled met the central nervous system (CNS) criteria for FAS or PFAS at age 5 years. All remained at risk for PFAS since some types of CNS dysfunction associated with this diagnosis may only be assessed at older ages. The FAS/PFAS facial phenotypes were 8.5-fold more likely among children exposed to an average of 1 to 4 drinks/wk and 2.5-fold more likely among children with a single binge exposure in gestational weeks 3 to 4 compared to children with no such exposures. The magnitude of expression of the FAS facial phenotype was significantly correlated with all other diagnostic features of FAS: growth deficiency, microcephaly, and measures of CNS dysfunction. CONCLUSIONS: These findings suggest that low-to-moderate levels of PAE or isolated binge exposures may place some fetuses at risk for FAS/PFAS. Thus, conservative advice is still for women to abstain from alcohol consumption during pregnancy.

Fetal alcohol syndrome among children aged 7-9 years - Arizona, Colorado, and New York, 2010.

Fetal alcohol syndrome (FAS) is a serious birth defect and developmental disorder caused by in utero exposure to alcohol. Assessment of the public health burden of FAS through surveillance has proven difficult; there is wide variation in reported prevalence depending on the study population and surveillance method. Generally, records-based birth prevalence studies report estimates of 0.2-1.5 per 1,000 live births, whereas studies that use in-person, expert assessment of school-aged children in a community report estimates of 6-9 per 1,000 population. The Fetal Alcohol Syndrome Surveillance Network II addressed some of the challenges in records-based ascertainment by assessing a period prevalence of FAS among children aged 7‒9 years in Arizona, Colorado, and New York. The prevalence across sites ranged from 0.3 to 0.8 per 1,000 children. Prevalence of FAS was highest among American Indian/Alaska Native children and lowest among Hispanic children. These estimates continue to be much lower than those obtained from studies using in-person, expert assessment. Factors that might contribute to this discrepancy include 1) inadequate recognition of the physical and behavioral characteristics of FAS by clinical care providers; 2) insufficient documentation of those characteristics in the medical record; and 3) failure to consider prenatal alcohol exposure with diagnoses of behavioral and learning problems. Addressing these factors through training of medical and allied health providers can lead to practice changes, ultimately increasing recognition and documentation of the characteristics of FAS.

Methods for surveillance of fetal alcohol syndrome: The Fetal Alcohol Syndrome Surveillance Network II (FASSNetII) - Arizona, Colorado, New York, 2009 - 2014.

Surveillance of fetal alcohol syndrome (FAS) is important for monitoring the effects of prenatal alcohol exposure and describing the public health burden of this preventable disorder. Building on the infrastructure of the Fetal Alcohol Syndrome Surveillance Network (FASSNet, 1997-2002), in 2009 the Centers for Disease Control and Prevention awarded 5-year cooperative agreements to three states, Arizona, Colorado, and New York, to conduct population-based surveillance of FAS. The Fetal Alcohol Syndrome Surveillance Network II (FASSNetII, 2009-2014) developed a surveillance case definition based on three clinical criteria: characteristic facial features, central nervous system abnormalities, and growth deficiency. FASSNetII modified the FASSNet methods in three important ways: (1) estimation of a period prevalence rather than birth prevalence; (2) surveillance of FAS among school-age children (ages 7-9 years) to better document the central nervous system abnormalities that are not apparent at birth or during infancy; and (3) implementation of an expert clinical review of abstracted data for probable and confirmed cases classified through a computerized algorithm. FASSNetII abstracted data from multiple sources including birth records, medical records from child development centers or other specialty clinics, and administrative databases such as hospital discharge and Medicaid. One challenge of FASSNetII was its limited access to non-medical records. The FAS prevalence that could be estimated was that of the population identified through an encounter with the healthcare system. Clinical and public health programs that identify children affected by FAS provide critical information for targeting preventive, medical and educational services in this vulnerable population.

The association of mild, moderate, and binge prenatal alcohol exposure and child neuropsychological outcomes: a meta-analysis.

BACKGROUND: The objective of this review is to evaluate the literature on the association between mild, moderate, and binge prenatal alcohol exposure and child neurodevelopment. METHODS: Meta-analysis with systematic searches of MEDLINE (1970 through August 2012), EMBASE (1988 through August 2012), and PsycINFO(®) (1970 through August 2012) and examination of selected references. RESULTS: From 1,593 articles, we identified 34 presenting data from cohort studies that met our inclusion criteria. Information on study population, outcomes, measurement instruments, timing and quantification of alcohol exposure, covariates, and results was abstracted. Outcomes included academic performance, attention, behavior, cognition, language skills, memory, and visual and motor development. The quality of each article was assessed by 2 researchers using the Newcastle-Ottawa Scale. Based on 8 studies of 10,000 children aged 6 months through 14 years, we observed a significant detrimental association between any binge prenatal alcohol exposure and child cognition (Cohen's d [a standardized mean difference score] -0.13; 95% confidence interval [CI], -0.21, -0.05). Based on 3 high-quality studies of 11,900 children aged 9 months to 5 years, we observed a statistically significant detrimental association between moderate prenatal alcohol exposure and child behavior (Cohen's d -0.15; 95% CI, -0.28, -0.03). We observed a significant, albeit small, positive association between mild-to-moderate prenatal alcohol exposure and child cognition (Cohen's d 0.04; 95% CI, 0.00, 0.08), but the association was not significant after post hoc exclusion of 1 large study that assessed mild consumption nor was it significant when including only studies that assessed moderate alcohol consumption. None of the other completed meta-analyses resulted in statistically significant associations between mild, moderate, or binge prenatal alcohol exposure and child neuropsychological outcomes. CONCLUSIONS: Our findings support previous findings suggesting the detrimental effects of prenatal binge drinking on child cognition. Prenatal alcohol exposure at levels less than daily drinking might be detrimentally associated with child behavior. The results of this review highlight the importance of abstaining from binge drinking during pregnancy and provide evidence that there is no known safe amount of alcohol to consume while pregnant.

Lifestyle during pregnancy: neurodevelopmental effects at 5 years of age. The design and implementation of a prospective follow-up study.

BACKGROUND: It has been suggested that even mild exposure to alcohol, caffeine, smoking, and poor diet may have adverse long-term neurodevelopmental effects. In addition, there is evidence that timing of high exposures (e.g. binge drinking) can have particularly negative effects. This paper describes the design and implementation of The Lifestyle During Pregnancy Study addressing major methodological challenges for studies in this field. The study examines the effects of lifestyle during pregnancy on offspring neurodevelopment. METHODS: In 2003, we initiated a prospective follow-up of 1750 mother-child pairs, sampled on the basis of maternal alcohol drinking patterns from The Danish National Birth Cohort (DNBC), a study of 101,042 pregnancies enrolled 1997-2003. Data collection in the DNBC involved four prenatal and postnatal maternal interviews, providing detailed information on maternal alcohol drinking patterns before and during pregnancy, caffeine intake, smoking, diet, and other lifestyle, medical, and sociodemographic factors. RESULTS: At the age of 5 years, the children and their mothers participated in a comprehensive assessment of neurobehavioural development focusing on global cognition, specific cognitive functions, and behaviour. Two new tests assessing attention and speed of information processing among children were developed, and data on important potential confounders such as maternal intelligence quotient, vision, and hearing abilities were collected. Efforts were made to standardise procedures and obtain high inter-rater reliability. CONCLUSIONS: We expect that the study will illuminate the significance or lack of significance of maternal lifestyle during pregnancy and contribute to better understanding the effects of alcohol drinking during pregnancy at low to moderate consumption levels.

Children prenatally exposed to alcohol and other drugs: what the literature tells us about child welfare information sources, policies, and practices to identify and care for children.

Many parents who interact with the child welfare system present with substance use issues, which means their children are at risk for prenatal exposure to alcohol and other drugs. Because child welfare agencies play an important role in identifying and providing services to mitigate negative impacts of prenatal exposures, we conducted a search for literature addressing child welfare information sources, policies, and practices related to this population. The search yielded 16 research/evaluation and 16 policy/practice papers, with most addressing exposures to both alcohol and other drugs. The literature most commonly reports that children identified as exposed are referred to child protection agencies during the newborn period. This practice may lead to underidentification, especially of children with prenatal exposure to alcohol. Research suggests that this population is at risk for poorer child welfare outcomes and that there are specific service needs for these children. This review indicates that there is an overall lack of research literature regarding identification of prenatally exposed children involved in the child welfare system that could best inform child welfare policies and practices. Studies investigating how the child welfare system identifies and cares for children with prenatal exposures are needed.

Guidelines for identifying and referring persons with fetal alcohol syndrome.

Fetal alcohol syndrome (FAS) results from maternal alcohol use during pregnancy and carries lifelong consequences. Early recognition of FAS can result in better outcomes for persons who receive a diagnosis. Although FAS was first identified in 1973, persons with this condition often do not receive a diagnosis. In 2002, Congress directed CDC to update and refine diagnostic and referral criteria for FAS, incorporating recent scientific and clinical evidence. In 2002, CDC convened a scientific working group (SWG) of persons with expertise in FAS research, diagnosis, and treatment to draft criteria for diagnosing FAS. This report summarizes the diagnostic guidelines drafted by the SWG, provides recommendations for when and how to refer a person suspected of having problems related to prenatal alcohol exposure, and assesses existing practices for creating supportive environments that might prevent long-term adverse consequences associated with FAS. The guidelines were created on the basis of a review of scientific evidence, clinical expertise, and the experiences of families affected by FAS regarding the physical and neuropsychologic features of FAS and the medical, educational, and social services needed by persons with FAS and their families. The guidelines are intended to facilitate early identification of persons affected by prenatal exposure to alcohol so they and their families can receive services that enable them to achieve healthy lives and reach their full potential. This report also includes recommendations to enhance identification of and intervention for women at risk for alcohol-exposed pregnancies. Additional data are needed to develop diagnostic criteria for other related disorders (e.g., alcohol-related neurodevelopmental disorder).

Neurobehavioral Disorder Associated With Prenatal Alcohol Exposure.

Children and adolescents affected by prenatal exposure to alcohol who have brain damage that is manifested in functional impairments of neurocognition, self-regulation, and adaptive functioning may most appropriately be diagnosed with neurobehavioral disorder associated with prenatal exposure. This Special Article outlines clinical implications and guidelines for pediatric medical home clinicians to identify, diagnose, and refer children regarding neurobehavioral disorder associated with prenatal exposure. Emphasis is given to reported or observable behaviors that can be identified as part of care in pediatric medical homes, differential diagnosis, and potential comorbidities. In addition, brief guidance is provided on the management of affected children in the pediatric medical home. Finally, suggestions are given for obtaining prenatal history of in utero exposure to alcohol for the pediatric patient.

Recognition and prevention of fetal alcohol syndrome.

Alcohol use among women of childbearing age is prevalent in the United States, with approximately 1 in 5 nonpregnant women reporting binge drinking (5 or more drinks on any one occasion) and 1 in 25 pregnant women reporting binge drinking. Alcohol use during pregnancy results in a spectrum of adverse outcomes known as fetal alcohol spectrum disorders. Fetal alcohol syndrome (FAS) is one of these disorders. Fetal alcohol syndrome is characterized by specific facial abnormalities and significant impairments in neurodevelopment and physical growth. Early identification of children with FAS has been shown to enhance their long-term outcomes. In an effort to improve clinical recognition of children with this condition, Centers for Disease Control and Prevention (CDC) was directed by Congress in 2002 to lead the development of uniform diagnostic criteria for FAS and other prenatal alcohol-related conditions. The purpose of this commentary is to provide clinicians a summary of the report released by CDC describing the current diagnostic criteria for FAS. In addition, advancements have been made in screening and brief interventions for alcohol use disorders in women who have the potential to make significant strides in the prevention of FAS spectrum disorders. Knowledge of the diagnostic criteria for FAS can lead to increased identification of the syndrome in infants and children and the provision of appropriate medical and support services. Screening for and intervening with women at risk for an alcohol-exposed pregnancy can prevent FAS and other fetal alcohol spectrum disorders.

THE EFFECT OF LOW TO MODERATE PRENATAL ALCOHOL EXPOSURE AND BINGE DRINKING EPISODES ON DRAW-A-PERSON AT AGE 5 YEARS.

This study examined the effects of maternal alcohol consumption and binge drinking during pregnancy on children's Draw-A-Person (DAP) scores. Participants were 1,533 5-year-olds from the Danish National Birth Cohort. Regression analyses revealed an adverse effect of nine or more drinks per week. A drop in mean DAP score of 6.26 (95 % CI: -12.24; -0.39) was observed in the fully adjusted model. A significant interaction between average weekly consumption and binge episodes also was observed. Findings suggest that prenatal exposure to moderate weekly doses of alcohol and binge drinking episodes are associated with lowered scores on the DAP.

Attentional characteristics of infants and toddlers with Williams syndrome during triadic interactions.

Two studies were conducted to consider the looking behavior of infants and toddlers with Williams syndrome (WS). In Study 1,the looking behavior of a 10-month-old girl with WS during play sessions with her mother and with a stranger was compared to that of 2 groups of infants who were developing normally (ND),1 matched for chronological age and the other for developmental age. The infant with WS spent more than twice as much time looking at her mother as the infants in either contrast group did. She also spent twice as much time looking at the stranger. In addition, during 78%of this time, her gaze at the stranger was coded as extremely intense. Looks of this intensity were virtually never made by the ND infants. In Study 2,the looking behavior of 31 individuals with WS ages 8 to 43 months during a genetics evaluation was compared to that of 319 control children in the same age range (242 with developmental delay due to causes other than WS).Twenty-three of the 25 participants with WS aged 33 months or younger demonstrated extended and intense looking at the geneticist. In contrast, none of the control participants looked extensively or intently at the geneticist. Findings are discussed in the context of previous research on arousal and focused attention during normal development and on temperament and personality of older children and adults with WS. It is argued that the unusual looking patterns evidenced by infants and toddlers with WS presage the unusual temperament and personality of older individuals with WS, and the possibility of a genetic basis for these behaviors is addressed.

Predictors of intelligence at the age of 5: family, pregnancy and birth characteristics, postnatal influences, and postnatal growth.

Parental education and maternal intelligence are well-known predictors of child IQ. However, the literature regarding other factors that may contribute to individual differences in IQ is inconclusive. The aim of this study was to examine the contribution of a number of variables whose predictive status remain unclarified, in a sample of basically healthy children with a low rate of pre- and postnatal complications. 1,782 5-year-old children sampled from the Danish National Birth Cohort (2003-2007) were assessed with a short form of the Wechsler Preschool and Primary Scale of Intelligence - Revised. Information on parental characteristics, pregnancy and birth factors, postnatal influences, and postnatal growth was collected during pregnancy and at follow-up. A model including study design variables and child's sex explained 7% of the variance in IQ, while parental education and maternal IQ increased the explained variance to 24%. Other predictors were parity, maternal BMI, birth weight, breastfeeding, and the child's head circumference and height at follow-up. These variables, however, only increased the explained variance to 29%. The results suggest that parental education and maternal IQ are major predictors of IQ and should be included routinely in studies of cognitive development. Obstetrical and postnatal factors also predict IQ, but their contribution may be of comparatively limited magnitude.

Medical expenditures of children in the United States with fetal alcohol syndrome.

This paper calculates the medical expenditures for pediatric Medicaid enrollees with fetal alcohol syndrome (FAS), those with and those without reported intellectual disability (ID). The pediatric portion of the MarketScan® Medicaid Multi-State databases for the years 2003-2005 was used. Children with FAS were identified based on International Classification of Diseases, Ninth Revision, Clinical Modification codes. Children without FAS formed the comparison group. Annual mean, median, and 95(th) percentile total expenditures were calculated for those continuously enrolled during 2005. Children with FAS incurred annual mean medical expenditures that were nine times as high as those of children without FAS during 2005 ($16,782 vs. $1,859). ID more commonly was listed as a medical diagnosis among children with FAS than among children in the comparison group (12% vs. 0.5%), and mean expenditures of children with FAS and ID were 2.8 times those of children with FAS but without reported ID. Children with FAS incurred higher medical expenditures compared with children without FAS. A subset of children with FAS who had ID sufficiently serious to be recorded in medical records increased those expenditures still further. Our estimate of mean expenditures for children with FAS was several times higher than previous estimates in the United States.

Interventions for children with fetal alcohol spectrum disorders (FASDs): overview of findings for five innovative research projects.

It is well established that prenatal exposure to alcohol causes damage to the developing fetus, resulting in a spectrum of disorders known as fetal alcohol spectrum disorders (FASDs). Although our understanding of the deficits and disturbances associated with FASDs is far from complete, there are consistent findings indicating these are serious, lifelong disabilities-especially when these disabilities result from central nervous system damage. Until recently, information and strategies for interventions specific to individuals with FASDs have been gleaned from interventions used with people with other disabilities and from the practical wisdom gained by parents and clinicians through trial and error or shared through informal networks. Although informative to a limited degree, such interventions have been implemented without being evaluated systematically or scientifically. The purpose of this article is to provide a brief overview of a general intervention framework developed for individuals with FASDs and the methods and general findings of five specific intervention research studies conducted within this framework. The studies evaluated five different interventions in five diverse locations in the United States, with different segments of the FASD population. Nonetheless, all participants showed improvement in the target behaviors or skills, with four studies achieving statistical significance in treatment outcomes. Important lessons emerged from these five interventions that may explain success: including parent education or training, teaching children specific skills they would usually learn by observation or abstraction, and integration into existing systems of treatment. A major implication of these research studies for families dealing with FASDs is that there are now interventions available that can address their children's needs and that can be presented as scientifically validated and efficacious to intervention agents such as schools, social services, and mental health providers. In the field of FASD research and clinical service, a common theme reported by families has been that clinicians and professionals have been reluctant to diagnose their children because there were no known effective treatments. Results of these five studies dispel that concern by demonstrating several interventions that have been shown to improve the lives of individuals with FASDs and their families.

Tracking binge drinking among U.S. childbearing-age women.

OBJECTIVE: The purpose of this analysis was to track the estimated prevalence of binge drinking for the years 2001-2003 among U.S. women of childbearing age in order to inform ongoing efforts to prevent alcohol-exposed pregnancies. METHOD: A total of 58,431, 64,181, and 65,678 women aged 18-44 for the years 2001, 2002, and 2003, respectively, participated in the Centers for Disease Control and Prevention's (CDC) Behavioral Risk Factor Surveillance System (BRFSS) survey. The estimated binge drinking prevalence for each survey year and changes in these estimates for the entire survey period were calculated for these women. RESULTS: The estimated binge drinking prevalence among childbearing-age women 18-44 years for the years 2001, 2002, and 2003 was 11.9%, 12.4%, and 13.0%, respectively. The estimated number of childbearing-age women who engaged in binge drinking rose from 6.2 million in 2001 to 7.1 million in 2003, an increase of 0.9 million. CONCLUSION: The results of this analysis provide support for enhancing efforts among healthcare providers to identify and intervene with childbearing-age women who engage in alcohol use that can increase their risks for various health problems, including an alcohol-exposed pregnancy.