Fetal Alcohol Spectrum Disorders (FASD)

Washington D.C.

Causes of Mental Retardationin the U.S.

• Prenatal Alcohol Syndrome

• Downs Syndrome

• Fragile X Syndrome

FASD in Washington D.C.

• Born each yearFAS 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 tracking1984-1996

Site 2 Kindergarten students FAS = 1/98 students1992-2005 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 CHILDRENAge Diagnosis 7.1 years

Older Sibs 2

Younger 2

Birth Defects 15%

Cerebral Palsy 6%

Mental Retardation 25%

ADHD 75%

Out of Home 85%

Head Injury 15%

FASD Deaths

Dead Sibling

2.4%

4.5%

Dosage Effect on Subsequent Births

1st Child 2nd Child 3rd Child 4th Child

Severity

Often unaffected

1 minor disorder or defect

FAS

FAS with Multiple Comorbidities

Severity Effect on Subsequent Births

FASD – Familial and Generational

X

X

FAS - Red

PFAS - Yellow

ARND - Green

SIDS

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 Care5 Low Standard Prenatal Care 20-40 Moderate Standard Prenatal Care and Patient Education on FAS45-50 High High Risk pregnancy, Alcohol-Drug Abuse Treatment55-85 Very High High Risk Pregnancy, Inpatient Treatment Total Score

PrenatalCopyright 2000

Exposure Assessment

When was your last drink?

D r i n k i n g D u r i n g P r e g n a n c yC u m u l a t i v e F e t a l E x p o s u r e F e t a l E x p o s u r e t o F u l l

D r i n k s P e r D a y ( D r i n k s p e r d a y x 2 7 0 ) A b s o l u t e A l c o h o l i n O z . * B a b y B o t t l e s

1 2 7 0 1 3 5 1 51 5

2 5 4 0 2 7 0 3 33 3

1 0 2 7 0 0 1 3 5 0 1 6 81 6 8

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

Low

High

FASD Diagnostic Age in YearsBirth

2 4 6 8 10 12 14 16 18 20 22 24 26 28 30 32 34 36

Criteria are Age Dependent

0

2

4

6

8

10

12

14

16

18

3rd 5th 10th

FAS Part FAS No FAS

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. American Family Physician, Vol. 72

Small head circumference

Epicanthic folds

Short nose

Indistinct philtrum

(an underdeveloped groove in the center of the upper lip between the nose and lip edge)

Short midface

Low nasal bridge

Short palpebral fissures obscure

the canthus (the inner corner

of the eye)

a normal feature in certain species of the Mongolian

race

Thin reddish upper lip

Fetal Alcohol Screening

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

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

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

Exposu

re

High

LowFetal Stillbirth Infant FASD-ARNDDeath Mortality

Adverse Outcomes

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 3,157women using alcohol during

pregnancy in 2006

How many are identified?

Heavy uses who drink all 40 weeks of pregnancy = 158.

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?