FETAL ALCOHOL SPECTRUM DISORDERS

Amy Hendricks,

CoordinatorNC Fetal Alcohol Prevention Program

NC Fetal Alcohol Prevention Program (FASDinNC) Fullerton Genetics, Permission Granted

FETAL ALCOHOL SPECTRUM DISORDERS The Impact of Alcohol Exposed Pregnancies 2019 Rooted in Advocacy ConferenceThe Arc of North Carolina March 29th, 2019

Amy Hendricks, Coordinator NC Fetal Alcohol Prevention ProgramFASDinNC.orgMission’s Fullerton Genetics CenterAsheville, NC828-213-0035amy.hendricks@msj.org

Presentation Overview:

❑ Understand Fetal Alcohol Spectrum Disorders (FASDs)

➢ The impact of alcohol on the developing brain

➢ Timing of exposure

➢ Characteristics of FASDs

➢ Presentation across the lifespan

➢ Why we should be concerned

❑ Identify the Scope of the Issue: Alcohol

➢ Alcohol use among women

➢ Recognize it’s all alcohol

❑ The Impact of social determinants on women’s health

❑ Understand your call to action for prevention

❑ Identify resources

If Only.

Public Service Announcement by the Mental Health Trust - Alaska

Fetal Alcohol Spectrum Disorders

Alcohol Use During Pregnancy Can Lead to

Graphic by FASDinNC.org

Fetal Alcohol Spectrum Disorders (FASDs)

Fetal Alcohol Spectrum Disorders: Is the “umbrella” term used to describe the range of life-time conditions that can occur if an individual is exposed to alcohol during pregnancy.

Fullerton Genetics/FASDinNC http://www.nofas.org/recognizing-fasd/

Static Encephalopathy

Conditions listed under the umbrella/spectrum are diagnosable.

Fetal Alcohol Syndrome

Fetal Alcohol Syndrome (FAS):A medical diagnosis that has a set of physical and cognitive symptoms. The criteria for FAS are specific, and all three must be present to receive this diagnosis.

❑Evidence of Growth Retardation/Restriction•Pre/postnatal height and/or weight at or below the 10th %

(not due to disease, illness or malnutrition)

❑Characteristic Facial Anomalies•Short palpebral fissures•Smooth philtrum•Thin upper lip

❑Central Nervous System Impairments•Structural•Neurological •Functional

Usually diagnosed by a clinical geneticist or by a developmental pediatrician.

Fetal Alcohol Spectrum Disorders Explained

Fetal Alcohol Syndrome (FAS) a medical diagnosis that has a set of physical and cognitive symptoms. The criteria for FAS are specific, and are at the extreme end of the spectrum.

Partial Fetal Alcohol Syndrome (pFAS): Some, but not all physical features, along with moderate to severe CNS abnormalities. Often referred to as “FAS without growth deficits.”

For every infant born with FAS, there are at least 10 infants on the spectrum that are not identified at birth.

Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE): Neurocognitive disabilities, problems with learning, memory, and behavior challenges. Often not identified until the individual is in the school system, if at all.

Static Encephalopathy: Refers to permanent (static) differences in the brain related to alcohol exposure – these can be determined to exist either through physical evidence (i.e. microcephaly) or a consistent pattern of differences in intellectual and adaptive functioning

http://www.nofas.org/recognizing-fasd/

Diagnosing in North Carolina

Atrium Health Levine Children’s

FASD Clinic of the Carolinas

2608 E. Seventh Street

Charlotte, North Carolina 28204

704-403-2626 Fax 704-403-2699

Dr. Yasmin Senturias, MD

FASD Clinic Fullerton Genetics 9 Vanderbilt Park Drive, Asheville, NC 28803

828-213-1051 fax 828-213-0039

Dr. Chad Haldeman-Englert

Dr. William Allen

Contact: Michael Pesant, Clinic Coordinator

michael.pesant@msj.org

North Carolina Clinical Genetics Centers

Please contact the genetic centers directly to see if their clinic is evaluating children for Fetal Alcohol Spectrum Disorders, because not all centers provide this service.

• Go to www.fasdinnc.org for more information

Alcohol is a Teratogen

A teratogen is defined as any agent, substance or occurrence which can induce abnormalities in the developing embryo or fetus; resulting in birth defects and/or life long cognitive and behavioral challenges.

Prenatal exposure to alcohol can cause:❑ Cell Death and Cell Migration Failure❑ Interference of Brain Development❑ Premature Birth❑ Pre & Postnatal Growth Restriction❑ Physical Malformations❑ Sudden Infant Death Syndrome (SIDS)❑ Lifelong Cognitive and Behavioral Problems

SAMHSA FASD Center for Excellence 2010

MotherToBaby.org

Effects of Alcohol on the Brain

Corpus Callosum

A: 14 - y. o. control subject: Normal corpus callosumB. 12 - y.o. with FAS and a thin corpus callosumC. 14 - y.o. with FAS and agenesis of the corpus callosum

Source: Mattson, S.N.; Jernigan, T.L.; and Riley, E.P. 1994. MRI and prenatal alcohol exposure: Images provide

insight into FAS. Alcohol Health & Research World 18(1): 49-52. (used with permission)

Timing of

Alcohol

Exposure –

Mouse Study

by Dr. Kathy

Sulik

UNC

Narrow forehead

Short palpebral fissures

Small nose

& Small midfaceThin upper lip withflattened philtrum

Alcohol Exposed No Exposure

Day 17 – 22 of the embryo’s development, is 3-4 weeks gestation for the woman.

Critical Periods of

Exposure in Human

Development

Graph Provided by NOFAS

“No amount of alcohol should be considered safe to drink during any trimester of pregnancy.

Surgeon GeneralThe American Academy of Pediatrics

American College of Obstetricians and Gynecologist

• Developmental Level

• Impacted Sensory Systems

• Learning and Memory

• Executive Functioning

Characteristicsof FASDs

Source: Diane V. Malbin, MSW FASCETS, Inc.

Primary Characteristics are Associated with Differences in Brain Structure and Function Due to Alcohol Exposure.

Secondary Characteristics are the Defensive “Behaviors” that Develop Over Time When There is a “Poor Fit”.• Anxious, Lonely and Isolated• Depressed, Short fuse, Angry

Tertiary Characteristics are the Net Result of a Chronic Poor Fit, Failure, Isolation and Alienation.

• Trouble in School• Social Services Involvement• Involvement with Justice System• Homelessness• Substance Use /Mental Health Issues

NC Fetal Alcohol Prevention Program (FASDinNC) Fullerton Genetics, Permission Granted

Presentation Acrossthe Lifespan

NC Fetal Alcohol Prevention Program (FASDinNC) Fullerton Genetics, Permission Granted

Infant to Pre-school

Infant

▪ Small in height and weight

▪ Difficult to soothe

▪ Poor feeding

▪ Bonding problems

Toddler (9 months to 4 years)

▪ Head banging▪ Problems with fine/gross motor development▪ Language delays▪ Poor coordination and balance▪ Memory problems▪ Hyperactivity▪ Developmental delays▪ Cognitive impairment (intellectual disability)▪ Sensory issues (often seeking) Streissguth, et al. (2004)

NC Fetal Alcohol Prevention Program (FASDinNC) Fullerton Genetics, Permission Granted

School Age (4-12 yrs. old)

▪ Learning disabilities

▪ Poor social skills (turn-taking, conversation)

▪ Short attention span

▪ Memory problems (retrieval)

▪ Trouble processing information

▪ Social and emotional delays

▪ Executive functioning deficits

▪ Impulsivity

▪ Difficulty with abstract concepts

▪ Frequent tantrums

▪ Lower IQ

▪ Slow task completion

▪ Poor risk assessment (fearlessness) Streissguth, et al. (2004)

NC Fetal Alcohol Prevention Program (FASDinNC) Fullerton Genetics, Permission Granted

▪ Less obvious features

▪ Poor judgment and impulsivity

▪ Defiant and uncooperative

▪ Can’t predict consequences

▪ No “stranger danger”

▪ Alcohol and drug use

▪ Difficulty telling time, & keeping appointments

▪ Talk the talk, but not walk the walk

Adolescence in to

Adulthood:

Streissguth, et al. (2004)

Why Should We Be

Concerned?

Because…

This isn’t just national data, the 1 in 20 is North Carolina data.Prenatal Alcohol Exposure is the leading, preventable cause of I/DD in our state and nation!

Philip A. May, PhD: et al JAMA. 2018;319(5):474-482. doi:10.1001/jama.2017.21896

Fetal Alcohol Spectrum Disorders Crosses All Systems of Care.

• 94% of individuals with an FASD also have a mental illness

• 50% of adolescents and adults displayed inappropriate sexual behavior

• 60% of people with an FASD have a history of trouble with the law

• 50% of individuals with an FASD have a history of confinement in a jail, prison, residential drug treatment facility, or psychiatric hospital

• 80% of children with an FASD are in foster or adoptive placement

• 61% of adolescents with an FASD experienced significant school disruptions

Many individuals have a misdiagnosis or are not diagnosed. This can result in a poor fit as it relates to educational services, substance use treatment programs, as well as mental health services.

Source: Streissguth, A.P.; Bookstein, F.L.; Barr, H.M.; et al. 2004. Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal

alcohol effects. Journal of Developmental and Behavioral Pediatrics 25(4):228-238

Why Should We Be

Concerned?

▪ Understand FASDs and its impact on an individual/brain

▪ Remember that behavior is a result of the brain damage

▪ Consider using screening tools to assess individual’s ability/strengths

▪ Think developmental age, not chronological age or by their physical appearance. Set reasonable expectations(16 vs 6 yo)

▪ Be aware of limitations in decision making, planning, and prioritizing. Need for external support/interventions.

How to Address the Needs of an Individual with FASDs

Sources of above information: National Organization on Fetal Alcohol Syndrome; studies by Anne Streissguth, PhD, Fetal Alcohol and Drug Unit, University of Washington; studies by Edward Riley, PhD, San Diego State University, Chair of the National Task Force on FAS; and Robin LaDue, PhD, Fetal Alcohol and Drug Unit, University of Washington. More information on FASD can be found at www.fasstar.com

NC Fetal Alcohol Prevention Program (FASDinNC) Fullerton Genetics, Permission Granted

Scope of the Issue:

Alcohol Use Among WomenWhy Women May Continue to DrinkIt’s ALL AlcoholStandard Serving

Scope of the Issue:

Alcohol Use Among Non-

PregnantWomen:

National Data

• Approximately 3.3 million U.S. women of child-bearing years (15–44 years) who were not pregnant and not sterile are at risk for an alcohol-exposed pregnancy.

• Among non-pregnant women, the prevalence of any alcohol use was 53.6% and the prevalence of binge drinking was 18.2%.

North Carolina

• Among non-pregnant women in North Carolina, the prevalence of any alcohol use was 50.6% and the prevalence of binge drinking 17.3%.

Vital Signs: Alcohol-Exposed Pregnancies — United States, 2011–2013http://www.cdc.gov/mmwr/volumes/65/wr/mm6504a6.htmWeekly / February 5, 2016 / 65(4);91–97

2016 PRAMS Data NCDHHS.GOVPicture Used with permission by The Brand Affect

Alcohol Use Among

Pregnant Women in the United States(18 - 44yrs.)

Vital Signs: Alcohol-Exposed Pregnancies — United States, 2011–2013http://www.cdc.gov/mmwr/volumes/65/wr/mm6504a6.htmWeekly / February 5, 2016 / 65(4);91–97Picture used with permission by The Brand Affect

National Data

1 in 10 pregnant women reports alcohol use*.

1 in 33 reports binge drinking.

Among pregnant women, the highest estimates of reported alcohol use were among those who were:

▪ 35 - 44 years old

▪ College graduates

▪ Not married

*Defined as at least one drink of any alcoholic beverage in the past 30 days

Alcohol Use Among

Pregnant Women in NC(18 - 44 yrs.)

2016 PRAMS Data NCDHHS.GOVPicture used with permission by NOFAS

• 54.9% Drank alcohol three months prior to pregnancy.

• 8.3% Drank alcohol during the last three months of pregnancy.

• 14.4% Did not change their alcohol consumption from before pregnancy, during pregnancy.

• Knowledge of Pregnancy

39.2% (1 to 4 weeks)

57.1% (5+ weeks)

Why Women Might

Continue to Drink During Pregnancy.

• Struggle with a substance use disorder

• Encouraged/influenced by their partners

• Women are receiving mixed messages• Primary Care Providers• Support System/Peers• Social Media

• May not think alcohol is harmful since it is a legal substance

• Alcohol warning not being paired with life planning message

• Women are targeted by the industry and encouraged to drink

• Limited warning signage about the dangers of alcohol during pregnancy

• Lack of knowledge about alcohol, serving sizes and binge drinking

It’s All Alcohol

Beer/Lager/AleMeadWine/Wine Spritzers/CoolersHard LemonadeHard CiderMoonshineShots/Shooters Liqueurs/ModifiersJell-O-shotsWhipaholBoozy Ice CreamSnobars Alcopops

Many alcopops can have 12% alcohol per 23.5 oz. can = 4-5 drinks in one container!

Picture Purchased from Big Stock

Defining a Standard

Drink

Definition of Binge Drinking for Women:4 standard drinks/occasion. How do we define an occasion?

Source: cdc.gov

Time to Rethink this!

Source: Dribbleglass.com 2011

Alcohol Use Verses Illicit

Substances Use

0%

15%

30%

45%

60%

non-Pregnant Pregnant

Self

-re

po

rted

Past

Mo

nth

Use (

%)

Tobacco Products

Alcohol

Any Illicit Drug

Marijuana

Cocaine

Heroin

Pain Relievers

National Survey on Drug Use and Health, 2015

Past Month Use

♦ The two most common drugs used by non-pregnant women have been alcoholand tobacco

♦ This same statement is true for pregnant women

Among pregnant women, approximately .2% used heroin, and 1.1% used pain relievers non-medically in the past month

SAMHSA Office of Applied Statistics

Slide Source: Dr. Hendree Jones

The Institute of Medicine says, “Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neuro-behavioral effects in the fetus.” IOM, 1996

NC Fetal Alcohol Prevention Program (FASDinNC)

The Impact of Social Determinants on Women’s Health

Call to Action for Prevention

Resources

Only if.

• Reframe how we view alcohol use among women, the conversations we have with women about alcohol and the importance of refraining from judgement.

• Take the opportunity to talk about alcohol use with all women of childbearing age. (life planning, WIC or substance use prevention and treatment programs) Key Question(s) that need to be asked frequently.

Are you planning on getting pregnant in the coming year?

Followed by…

Are you planning on being sexual active in the coming year?

• Identify resources that can help you have these discussions with women. communitycarenc.org ncsbirt.org ncpoep.org

• Be mindful of your role in the societal view/social acceptance of alcohol use.

• Learn more about the social determinants of health in your community/state.

https://www.ncdhhs.gov/news/press-releases/dhhs-releases-interactive-map-showing-social-determinants-health-indicators

• Be an advocate for change as it relates to alcohol policies in our state.

• Continue to learn more about FASDs: Prevention, Identification and Referral!

Your Call to Action

Resources

Prevention

www.FASDinNC.orgwww.nofas.orgwww.cdc.gov/ncbddd/fasdwww.mothertobabync.orghttps://www.communitycarenc.org/http://ncpoep.org/

Diagnosis

https://nccd.cdc.gov/FASD/https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/fetal-alcohol-spectrum-disorders-toolkit/Pages/default.aspx

Intervention

www.fascets.org/https://nfrc.ucla.edu/SEEDSwww.zerotothree.orghttps://pubs.niaaa.nih.gov/publications/arh341/64-75.htmhttps://osepideasthatwork.org/sites/default/files/IDEAsIssBrief-FASDs-508.pdf

Substance Use Preventionhttps://fasdprevention.files.wordpress.com/2017/11/substance-using-women-with-fasd-service-providers-perspectives-report-web.pdf

https://www.ncbi.nlm.nih.gov/books/NBK344242/ SAMHSA Tip 58http://journals.sfu.ca/fpcfr/index.php/FPCFR/article/view/204/32https://www.cdc.gov/violenceprevention/acestudy/index.html

Social Work

https://www.tandfonline.com/doi/abs/10.1080/15332980802466565 (Social Work in Mental Health)https://www.socialworkers.org/LinkClick.aspx?fileticket=Xi0H5JNZ9Bg%3D&portalid=0https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4569135/

FASDs Can Be 100% Preventable

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