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Adverse Outcomes From Prenatal Alcohol Exposure
By: Larry Burd, Ph.D. Director North Dakota Fetal Alcohol Syndrome Center
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The National Center on Addiction and Substance Abuse, 1999
3.9 Million Births 1,560,000 Exposed 137,000 Frequent heavy drinking 39,000 FASD The National Center on Addiction and Substance Abuse, 1999
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The National Center on Addiction and Substance Abuse, 1999
Lost productivity due to FAS: Adults - $1,000,000,000/annually $2,739,000/day Health care costs due to FAS: Children and adults $2,000,000,000/annually $5,479,000/day The National Center on Addiction and Substance Abuse, 1999
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North Dakota Alcohol Income (2000)
Wholesale tax $ 5,500,000 Sales tax $14,500,000 Total $20,000,000
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FAS In Florida Born Each Year Cost Per Day $957,286
ARND 415 Total 518 Cost Per Day $957,286 Annual Cost $432 million Annual Cost Special $82 million Education and Juvenile Justice 5 year Costs $1.7 billion
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Family History Maternal Risk Factors
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Family History Familial Multigenerational Genetic Factors
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Increased Probability of a Previous Child with Fetal Alcohol Syndrome
Total number of live births prior to birth of FAS child Number of children with FAS in prior births Estimated incidence of FAS per 1,000 live births Incidence of FAS in previous births per 1,000 live births Risk increased by 135 23 .97 170.4 172x Source: E.L> Abel, Fetal Alcohol Syndrome in Families, Neurotoxicity and Teratology (1988), 10, pp.1-2. Copyright 1988 by Elsevier Science, Adapted with permission of the publisher.
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Increased Risk of Having a Second Child with Fetal Alcohol Syndrome
Total number of live births after birth of FAS child Number of children with FAS in subsequent births Estimated incidence of FAS per 1,000 live births Incidence of FAS in subsequent births per 1,000 live births Risk increased by 35 27 .97 771 795x Source: E.L> Abel, Fetal Alcohol Syndrome in Families, Neurotoxicity and Teratology (1988), 10, pp.1-2. Copyright 1988 by Elsevier Science, Adapted with permission of the publisher.
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Comparison of North Dakota Children with Fetal Alcohol Syndrome (FAS)
to children with Fetal Alcohol Effect (FAE). Variable (n) Mean SD _____________________________________________________________ Birth Weight (grams) FAS * FAE ______________________________________________________________ Mother's Age (years) FAS FAE _______________________________________________________________ Father's Age (years) FAS FAE Weight Gain (kilograms) FAS FAE Gestation (weeks) FAS FAE Apgar (1 Minute) FAS FAE Apgar (5 Minute) FAS FAE * Significant at .05
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from North Dakota (adapted from Bagheri and Burd)21
Maternal and Paternal Risk Factor for FAS from 132 Cases of FAS/FAE and 5 controls per case from North Dakota (adapted from Bagheri and Burd)21 _______________________________________________________________________________ Variable Case/Control Mean (Difference) p-value Case/Control Mother's Age (years) 132/ /25.4 (2.0) <0.001 Father's Age (years) 43/ /27.8 (4.2) <0.001 Weight gain in pregnancy (lbs.) 33/ /30.4 (8.3) <0.001 Gestation (weeks) 101/ /40.0 (1.3) <0.001 Month prenatal care began 123/ / (0.7) <0.001 Number prenatal visits 123/ / (4.2) <0.001 Mother's education 125/ /13.0 (2.4) <0.001 Father's education 32/ /13.2 (2.6) <0.001
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THE MOMS Age 27.4 Education 10.6 Unmarried 63% Smoker 82% Alcoholic
10+ years Heavy Drinker > 10 day + Treatment > 3 (45%) Minority 73% Poor + Poor Diet Parity 3 Prenatal (1st) 1 Prenatal visits <3 Maternal Deaths FAE 4.1% FAS 4.5% Number of prenatal complications Number of prenatal visits Monthly prenatal care starts Birth weight Number of malformations
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THE DADS Age 30.8 Education 10.9 Unmarried 63% Alcoholic 12 + years
Heavy Drinker + Treatment > 3 Minority 60% Poor Other terminations Number of prenatal visits Number of prenatal complications
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THE CHILDREN Age Diagnosis 7.1 years Older Sibs 2 Younger
Birth Defects 20% Cerebral Palsy 6% Mental Retardation 30% ADHD 60% Out of Home 85% Head Injury 25% Dead Sibling FAS/FAE Controls 11% 2%
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THE DADS Age 30.8 Education 10.9 Unmarried 63% Alcoholic 12+ years
THE MOMS Age 27.4 Education 10.6 Unmarried 63% Smoker 82% Alcoholic years Heavy Drinker > 10 day Treatment >3 times (45%) Poor + Poor Diet + Parity 3 Prenatal (1st) 1 Prenatal visits < 3 Maternal deaths FAE 4.1% FAS 4.5% THE DADS Age 30.8 Education 10.9 Unmarried 63% Alcoholic years Heavy Drinker + Poor + THE CHILDREN Age diagnosis 7.1 years Older sibs 2 Younger 2 Birth defects 20% Cerebral Palsy 6% Mental retardation 30% ADHD 60% Out of Home 85% Head Injury 25% Dead Sibling FAS/FAE 11.4% Controls 2.0%
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Mortality in a Ten-Year Follow-Up of FAS Children 18% cases 27% of the Mothers (Streissguth, 1985)
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MATERNAL RISK SCORE SCORE
____Age Over 25 years ____Unmarried, Divorced, Widow, Living with Partner Check any one, ____On AFDC, WIC, Social Security or Income < $16,000 Per Year Add 5 ____Did not Graduate From High School ____Poor Diet ____Smokes More Than ½ Pack per Day ____Drinks less than 2 days/week & less than Check here, drinks /drinking day Add 20 ____Age First Drunk Less Than 15 years ____In Treatment Over Three Times ____In Treatment in Last 12 Months Check any one, ____Previous Child With FAS, FAE, Birth Defect, Add or Developmental Disability ____Previous Child Died ____Children Out of Home (Foster Care or Adopted) Check any one, ____Heavy Drinker (3 or more days per week or over 3 drinks Add per drinking day) ____Uses Inhalants, Sniffs or Illegal Drugs Score Risk Category Recommendations None Standard Prenatal Care Low Standard Prenatal Care Moderate Standard Prenatal Care and Patient Education on FAS High High Risk pregnancy, Alcohol-Drug Abuse Treatment Very High High Risk Pregnancy, Inpatient Treatment Total Score Prenatal Copyright 2000
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Exposure
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Adverse Outcomes Due to Prenatal Alcohol Exposure
Did mom drink? Did she drink enough? Abnormal signs or disorders Yes or No
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SCREENING FOR ALCOHOL ABUSE
TWEAK Test (Russell 1984) TOLERANCE How many drinks can you hold? If more than 5 drinks = 2 points WORRY Have close friends or relatives worried or complained about Your drinking in the past year? Yes = 2 points EYE-OPENER Do you sometimes take a drink in the morning when you first get up? Yes = 1 point AMNESIA Has a friend or family member ever told you about things you said or did while you were drinking that you could not remember? Yes = 1 point K/CUT DOWN Do you sometimes feel the need to cut down on your drinking? Yes = 1 point A score of 2 or above places the woman in a risk category and requires further assessment.
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Exposure Dose – Binge and Cumulative Timing - % of pregnancy exposed
Availability of Mother: Dead Family Jail Friends Treatment Social Worker Foster Care Medical Record Adopted Previous Treatment Foster Parent
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Fetal Alcohol Exposure:
Could increase severity of other disorders Could cause other disorders to occur – lower susceptibility Could cause FAS with other disorders FAS could obscure other disorders Could be irrelevant to phenotype
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Tom Welty MD AAIHS 1998 Prevalence Rate FAS AAIHS: 8 per 1,000 live births. 2 to 8 times above other population estimates.
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Assessment of Exposure During Pregnancy
On average how many days per week did you drink during pregnancy? _____(a) What is the most you had to drink on any one day during pregnancy? _____ On an average drinking day during pregnancy how many drinks did you have? _____(b) Exposure Parameters (Cumulative exposure during pregnancy) Pregnancy Drinking Days = ( a x 40 ) = _____(c) Estimate of number of drinking days during pregnancy. Percent of Days Exposed During Pregnancy = ( c ÷ 280 ) = Estimate of days exposed during pregnancy _____ Number of Drinks During Pregnancy = ( a x b x 40 ) = Estimate of number of drinks during pregnancy _____(d) Ounces of absolute alcohol = ( d ÷ 2 ) = _______ Estimate of exposure to absolute alcohol during pregnancy.
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Mortality
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Two Hundred and Fifty-Eight Cases of Suffocation of Infants
By Charles Templeman, M.D., B.Sc. (Pub. Health), Surgeon of Police; Surgeon to the Royal Infirmary, Dundee. (Read before the Medico-Chirurgical Society of Edinburgh, 1st June 1892.)
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If drinking over 2 years prior to pregnancy, mortality rate 62.7%
46% deaths occur on Saturday night and Sunday morning
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A Note on the Influence of Maternal Inebriety on the Offspring By W. C
A Note on the Influence of Maternal Inebriety on the Offspring By W. C. Sullivan, M.D., and Stewart Scholar in Mental Disease, R.U.I., Deputy Medical Officer, H.M. Convict Prison, Parkhurst (July, 1899)
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Mortality Women n = 100 (plus 20 female relatives) 600 Children
335 (55.8%) died 80 women had 3 or more dead infants
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Second Cause of Death: Maternal Drunkenness
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Mortality and Alcohol Use
Increased risk of SIDS Sibling mortality FAS/FAE 10% Controls 2% Increased risk of death Saturday and Sunday
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Diagnosis
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Diagnosis of People with Adverse Outcome from Prenatal Alcohol Exposure
Specific Pattern of Malformations. Confirmed History of Maternal Alcohol Use-Abuse. Specific Pattern of Neurocognitive Deficits.
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FAS AND ALCOHOL RELATED EFFECTS
DIAGNOSTIC CRITERIA FAS AND ALCOHOL RELATED EFFECTS (3, 4, and 5 require the presumption that the finding is due to prenatal alcohol exposure) FAS confirmed alcohol exposure confirmed maternal alcohol exposure characteristic facial anomalies growth retardation neurodevelopmental abnormalities FAS without confirmed maternal alcohol exposure B, C, and D above Partial FAS with confirmed maternal alcohol exposure some or partial characteristic facial features behavioral or cognitive abnormalities presumed due to prenatal alcohol exposure Alcohol-Related Birth Defects (ARBD) Cardiac Ocular-Auditory Other Skeletal Renal Alcohol-Related Neurodevelopmental Disorder (ARND) CNS neurodevelopmental abnormalities Complex pattern of behavior or cognitive abnormalities
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Signs of Prenatal Alcohol Exposure
Vision Hearing ADHD Mental Disorders Cognitive Impairment Height Weight Head Circumfrence < 10th Cleft Palate 3 or more facial features: Short palpebral fissions Absent philtrum Thin vermilion border upper lip Epicanthal Folds Neurological Abnormalities Cardiac Deficits Organ Abnormalities
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Growth 100% Diagnosed Diagnosis Cases < 10 Weight 100% Diagnosed
Height
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Diagnosis of Adverse Outcomes from Prenatal Alcohol Exposure
Pattern Malformations All are common Many appear together Maternal Alcohol Use-Abuse Only 10-15% moms accompany children Moms rarely interviewed Cousin, aunt, friend, neighbor, police Neurocognitive Deficits I Q - normed V-P split Neuropsychological Findings Cutoff – Abnormal test only % present in population with FAS without FAS
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Syndromal Variation Highly Variable Phenotype # Severe Classic
Phenotype Variation
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Syndromal Variation Highly Variable Phenotype # Severe
Currently Diagnosed Classic Phenotype Variation
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Highly Variable Phenotype
Syndromal Variation Highly Variable Phenotype CL & P Mortality ADHD Learning Disabilities Pregnancy Losses Hearing Impairment Number of Cases Mental Disorders Fertility Visual Impairment Birth Defects Severe Cognitive Deficits Infectious Illness Increased Severity Classic Phenotype Variation
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“I found one! It’s the only tree here, but I expected to find a whole forest....” Too big No leaves Smooth bark Too small FAS Has needles House, not tree Trunk too thick Looks like Family Has fruit Poor soil
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We have exact standards for trees.
We do not want to label or stigmatize.
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Inaccurate Diagnosis: Stigmatization of Mother Labeling of Child
Diagnostic Imprecision Parents Schools Doctors Epidemiologist Apathy
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Consequences of Misdiagnosis
Public Health Inaccurate Prevalence Outcome Causal Factors Cost Estimates Service Systems
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Consequences of Misdiagnosis
Mothers Recurrence Health Death Guilt Search for what’s wrong
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Consequences of Misdiagnosis
Child Misunderstood Behavior Inappropriate Treatment Secondary Disabilities Jail Substance Abuse Multiple Foster Homes Unnecessary testing
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Consequences of Misdiagnosis
Society Cost Low Priority for funding Recurrence Loss of Potential Infant-child Mortality Rate Increased Severity
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Consequences of Misdiagnosis
Mothers Recurrence Health Death Guilt Search for what’s wrong Public Health Inaccurate Prevalence Outcome Causal Factors Cost Estimates Service Systems Child Misunderstood Behavior Inappropriate Treatment Secondary Disabilities Jail Substance Abuse Multiple Foster Homes Unnecessary testing Society Cost Low Priority for funding Recurrence Loss of Potential Infant-child Mortality Rate Increased Severity
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Current Imprecision (Top 10)
Very few centers able to diagnose To complicated for most doctors Most moms missed Most children mislabeled Poor prevalence estimates Inadequate funding Low public health priority Generational recurrence High familial recurrence rate Inappropriate treatment – could but won’t
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Velocardiofacial Syndrome
Protective Effect Williams Syndrome Dubowitz Syndrome Velocardiofacial Syndrome Downs Syndrome Cerebral Palsy Spina Bifida
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Preferred Performance Characteristics
Captures many – most cases Reflects understanding of comorbidity Does not exert a protective effect Easy to implement Leads to prevention of recurrence Protects mother Decreases secondary disability Leads to appropriate interventions
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The Brain
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Examination of the developing mouse brain following alcohol exposure shows cells that have been killed. Apoptotic cells Nile blue stained in two of the pictures and dark brown at bottom right Kindly provided by Dr. K Sulik and Dr. W Dunty, Univ of North Carolina
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Ikonomidou C, et al. Science 287:1056-1060, 2000.
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Impairments in: Memory Attention Adaptive behavior Use of social rules Sleep Behavior regulation
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Treatment
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Treatment of FAS Start early-Avoid Abuse Avoid multiple foster homes Treat in community Make a place in the community Avoid problem peers Use legal system Long term treatment-more than 10 years
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A Developmental Management Model for Children and Adults With
A Developmental Management Model for Children and Adults With FAS and Related Disorders _____________________________________________________________________________ Newborn Management: 1. Diagnostic assessment of both physical and neurologic anomalies 2. Early involvement of child protective services. 3. Referral to the Department of Human Services for initiation of infant stimulation. 4. Prevention of secondary disabilities, specific to age group; abuse, vision/hearing deficits. 5. Referral of mother to substance abuse treatment program. 6. Sensory evaluation (vision and hearing). Childhood Management: 1. Head Start Program with special learning environment, addressing specific learning disabilities. 2. Annual developmental assessment. 3. Referral for services to address neurologic deficits and psychosocial delays. 4. Prevention of secondary disabilities.
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Monitoring social skill development
Adolescent Management: 1. Prevention of secondary disabilities, specifically drug and alcohol use. Prevention of school failure, social problems and institutionalization. 2. Vocational training, preparation for future employment. 3. Continuation of developmental assessments. 4. Develop long term plan (10 years). 5. Social skill development and monitor peer group. Adult Management: 1. Employment services (vocational rehabilitation). Social services and long-term support. Monitor for substance abuse. 4. Enhance awareness in adult service systems: mental health, substance abuse, corrections. ________________________________________________________________________
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Common Recommendations
Annual Evaluation Positive Behavior Management Program Respite Care IEP Monitor Peers Schedule Plan Ahead Evaluate All Siblings Find the Mom
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State Capacity and Prevention
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Estimating Capacity: Need for Diagnostic Services
FAS Cost and prevalence.
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Money Spent on People with FAS
Funding Services Money Spent on People with FAS “We have no funding. You are not eligible.” FAS Prevention
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What Can We Do Now? Community Assessment FASD Task Force
Inform Policy Makers Inform Policy Implementers
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Cost per Case Prevented
Prevention of FAS 10-18 cases of FAS born each year in ND. Treatment 50% Effective Alcohol Use & Other Risk Factors Risk of FAS Women Treated Quit * Cases Prevented Cost per Case Prevented Daily Alcohol Use 0.01% 20,000 10,000 1 $100,000,000 Heavy drinkers, middle class, non-smokers .29% 690 344 3,450,000 Heavy drinkers, low in-come, smokers, poor diet 4.3% 47 23 235,000 Women who have had a previous child with FAS 75% 3 15,000 * Quit after one year.
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Our One Year Anniversary
Number of new cases in one year: 518
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