Fetal Alcohol Spectrum Disorders (FASD) Washington D.C.

Causes of Mental Retardation in the U.S. Prenatal Alcohol Syndrome Downs Syndrome Fragile X Syndrome

FASD in Washington D.C. Born each year FAS 15 ARND 63 Total 78

Cost of FASD in Washington D.C. Daily cost $32,177 Annual cost $14,520,068 Special Education and Juvenile Justice $2,775,360 Five year cost $58.7 million

FASD RATES IN NORTH DAKOTA Location Population FASD Rates _________________________________________________________________ North Dakota Live Births 1.1% 1980-2003 Site 1 Prenatal care 1/17 = 6% Child tracking 1984-1996 Site 2 Kindergarten students FAS = 1/98 students 1992-2005 FASD = 17.6 – 22 per 1,000 children North Dakota Statewide EPSDT 28/2,809 = 1% One year 2001

Cost of Care for FASD Paying Upfront On the day before the child with FASD is born, a state needs to deposit over $540,000 in the bank to cover the lifetime cost of care.

THE MOMS Age 27.4 Education 10.6 Unmarried 63% Smoker 82% Alcoholic 10+ years Heavy Drinker > 10 day + Treatment > 3 (45%) Minority 53% Poor + Poor Diet Parity 3 Prenatal (1st) 1 Prenatal visits <3 Maternal Deaths 2.8%

THE DADS Age 30.8 Education 10.9 Unmarried 63% Alcoholic 12 + years Heavy Drinker + Treatment > 3 Minority 60% Poor

THE CHILDREN Age Diagnosis 7.1 years Older Sibs 2 Younger Birth Defects 15% Cerebral Palsy 6% Mental Retardation 25% ADHD 75% Out of Home 85% Head Injury FASD Deaths Dead Sibling 2.4% 4.5%

Severity Effect on Subsequent Births

FASD – Familial and Generational X X SIDS FAS - Red PFAS - Yellow ARND - Green

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, 2 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 FASD, Add 35 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 45 per drinking day) ____Uses Inhalants, Sniffs or Illegal Drugs Score Risk Category Recommendations 0 None Standard Prenatal Care 5 Low Standard Prenatal Care 20-40 Moderate Standard Prenatal Care and Patient Education on FAS 45-50 High High Risk pregnancy, Alcohol-Drug Abuse Treatment 55-85 Very High High Risk Pregnancy, Inpatient Treatment Total Score Prenatal Copyright 2000

Exposure Assessment

When was your last drink?

A.A. Nava-Ocampo et al./Reproductive Toxicology 18 (2004) 613-617 Time-course of maternal blood ethanol concentrations. Symbols represent the observed ethanol concentrations and lines resent the predicted values. The different shapes were used to represent the six patients; however, no specific order was used.

Diagnosis

FASD: Screening and Early Identification Sibling with FASD Mother in substance abuse treatment Foster care placement WIC clinics Juvenile Justice Programs Specialty Care Clinics

Phenotype Detectability Criteria are Age Dependent High Phenotype Detectability Low Birth 2 4 6 8 10 12 14 16 18 20 22 24 26 28 30 32 34 36 FASD Diagnostic Age in Years

Percent of Children who Moved Up in Height Percentile Category from Birth to Diagnosis N=232 %

Ikonomidou C, et al. Science 287:1056-1060, 2000.

FASD Related Impairments Memory Attention Adaptive behavior Use of social rules Sleep Behavior regulation

Reprinted with permission: Wattendorf, Daniel J Reprinted with permission: Wattendorf, Daniel J. American Family Physician, Vol. 72

Fetal Alcohol Screening Small head circumference Low nasal bridge Epicanthic folds Short palpebral fissures obscure the canthus (the inner corner of the eye) a normal feature in certain species of the Mongolian race Short nose Short midface Indistinct philtrum (an underdeveloped groove in the center of the upper lip between the nose and lip edge) Thin reddish upper lip

Reprinted with permission: Wattendorf, Daniel J Reprinted with permission: Wattendorf, Daniel J. American Family Physician, Vol. 72

Reprinted with permission: Wattendorf, Daniel J Reprinted with permission: Wattendorf, Daniel J. American Family Physician, Vol. 72

Reprinted with permission: Wattendorf, Daniel J Reprinted with permission: Wattendorf, Daniel J. American Family Physician, Vol. 72

Adverse Outcomes High Low Fetal Stillbirth Infant FASD-ARND Exposure Low Fetal Stillbirth Infant FASD-ARND Death Mortality

FASD: Does a diagnosis make a difference?

FASD Diagnosis Related Risks Cardiac defects > 30 fold ADHD > 25 fold Foster care placement > 50 fold Substance abuse risk > 20 fold Mental illness > 15 fold Corrections placement > 10 fold

Does a diagnosis of FASD change intervention?

FASD: Diagnosis Specific Management Issues Mortality rate increased 3-7 fold Substance abuse treatment for mother Evaluate all siblings Increased risk of substance abuse Recurrence rate in younger siblings 75% Long term planning Prevention of secondary disabilities

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

Common Recommendations Annual Evaluation Positive Behavior Management Program Respite Care IEP Monitor Peers Schedule Plan Ahead Evaluate All Siblings Find the Mom

Prevention of FASD Prevent recurrence Prevent subsequent exposed pregnancies

FASD Recurrence in Washington D.C. Annual birth cohort: 7,893 New FASD cases: 78 Recurrent cases: 20 5 will recur in families with multiple affected children. Start Prevention Here

Washington D.C. had 3,157 women using alcohol during pregnancy in 2006 How many are identified? Heavy uses who drink all 40 weeks of pregnancy = 158.

Can your program prevent one case of FASD this year? In Washington D.C. on this date next year, there will be 78 more people with FASD Can your program prevent one case of FASD this year?