FASD - Why we should be concerned

Fetal Alcohol Spectrum Disorders (FASD) is not on everyone’s mind, but perhaps it should be. FASD is an umbrella term describing the range of conditions and disabilities that can occur in an individual whose mother drank alcohol during pregnancy. FASD cannot be cured and the damage to the brain is permanent.

The only cause of FASD is alcohol use during pregnancy. If a woman does not drink alcohol during pregnancy, her baby will not have an FASD. So, FASD is completely preventable.

The most severe FASD is Fetal Alcohol Syndrome (FAS). Within the spectrum, there is also partial Fetal Alcohol Syndrome (pFAS), Alcohol Related Neurodevelopmental Disorders (ARND) and Alcohol Related Birth Defects (ARBD). Effects of FASD can vary widely from person to person. Not all children have characteristic facial features. Brain damage is the most serious effect. Other effects may include physical, mental, social, behavioral and/or learning disabilities. Effects such as poor reasoning and judgment skills can last throughout a lifetime.

Often, the effects of pre-natal alcohol exposure are mis-diagnosed as Autism Spectrum Disorders, Emotional/Behavioral Disorder, Attention Deficit Hyperactive Disorder or other disorders. If misdiagnosed, children with FASD do not receive the kind of help they need.

The average level of developmental skills for children with FASD is generally about half of their actual age. More specifically, an 18 year old may have the comprehension abilities of a six year old, the emotional maturity of an eight year old and the living skills of an 11 year old.

Southwestern Minnesota

A preliminary study identifying FASD diagnoses in medical records in a selected group of six southwestern Minnesota counties suggests there is a dramatic difference between the number of cases able to be identified through medical 

SW MN 18-county area for FASD study

records and what would be expected given state and national prevalence rates. This suggests that FASDs are vastly under-recognized and under-diagnosed in southwestern Minnesota. The actual number of cases found in the preliminary study averaged only one per county.

The estimated numbers are much higher when using even very conservative prevalence rates. Estimates for 18 counties in southwestern Minnesota (see adjacent map) are determined in the table below by using prevalence rates for FASD from the Center for Disease Control and a respected researcher. The estimates are based on the birth rate (number of live births per 1000 population) for each county according to MN Kids Count, 2010.

Source
Prevalence Rate
18-county area for one year (2010)
18-county area; birth through high school; 18 years
Centers for Disease Control, 2011 Approximately 1 child in every 100 live births will have an FASD 35 (estimate of number of children potentially with an FASD based on CDC prevelance rate) 630 (estimate of number of children potentailly with an FASD for age span; 18 x 35 = 630)
Institute of Medicine as cited by researcher Phillip May, 2009* 2% to 5% of live births 71 - 177 (estimated number of children potentially with an FASD based on May's research) 1,278 - 3,186 (estimated number of children potentially with an FASD for age span; 18 x 71 = 1,278; 18 x 177 = 3,186)
Most recent study; May et al, 2014** 24 to 48 per 1,000 children 85 - 170 (estimated number of children potentially with an FASD based on newest study in Midwestern city) 1,530 - 3,060 (estimated number of children potentially with an FASD for age span; 18 x 35 = 1,530; 18 x 170 = 3,060)

* May, P. A., Gossage, J. P., Kalberg, W. O., Robinson, L. K., Buckley, D., Manning, M., and Hoyme, H. E. (2009) Prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on recent in-school studies. Developmental Disabilities Research Reviews, 15, 176-192. 

** May, P. A., Baete, A., Russo, J., Elliott, A. J., Blankenship, J., Kalberg, W. O., Buckley, D., Brooks, M., Hasken, J., Abdul-Rahman, O., Adam, M. P., Robinson, L. K., Manning, M., and Hoyme, H. E. (2014) Prevalence and Characterisitics of Fetal Alcohol Spectrum Disorders. Pediatrics, 134. 855-866. 

Another way to look at the potential for FASD is to consider the number of pregnant women who drink. The Minnesota Organization on Fetal (MOFAS) estimates that about 1 in 13 pregnant women in Minnesota report alcohol use during their pregnancy. Here is the potential for FASD when the assumption is made that each of those pregnancies comes to term: 

Babies born in Minnesota each year with alcohol exposure 8,500 babies
Babies born in selected 18 counties each year with alcohol exposure 272 babies
Potential number of children with FASD in selected 18 counties over birth to age 18 based on the yearly estimates 4,896 babies (272 per year x 18 years)

Alcohol use during pregnancy is an extension of behavior before pregnancy. According to the CDC, 17.2 to 22.7 percent of Minnesota women ages 18-44, binge drink which is defined as four or more drinks on any one occasion in the last 30 days. Percentages for binge drinking across the states range from 4.7 to 22.7 percent meaning Minnesota is in the highest group. Additionally, MOFAS found a similar number (17%) in their 2013 statewide study in collaboration with the Wilder Foundation. Of that group, 71 percent of the women drank on average one or more days a week.

It is easy to say that pregnant women just shouldn’t drink, but that really oversimplifies the issue. Women may not be aware they are pregnant within the first trimester, 50 percent of pregnancies are unplanned and women with substance abuse problems need more support to avoid drinking during pregnancy. 

Cost to Families and Society

The lifetime cost for each child with Fetal Alcohol Syndrome can be $2 million or more for medical, educational and residential care (Source: FASD Center, Substance Abuse and Mental Health Services Administration, 2003).

It is estimated that FAS costs Minnesotans $107.4 million annually. (Source: Minnesota Organization on Fetal Alcohol Syndrome). 

Objectives and Accomplishments

The University of Minnesota Southwest Research and Outreach Center (SWROC) and University of Minnesota Extension provided a ConnectU professional development workshop on FASD in 2009 leading to families requesting more resources. Continuing exploration of this topic identified the need for more overall resources to assist the families with children with FASDs. Not only is more professional development needed, but it is crucial there be more tools for awareness, prevention, screening, diagnosis and programs for family interventions in southwest Minnesota.

The objective is to enhance resources in southwest Minnesota through partnering with relevant agencies and groups including the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS). Efforts to date include: 

  • ConnectU workshop presented by Chris Boys, Ph.D., and Judith Eckerle Kang, M.D., both from the University of Minnesota, for 67 professionals working with families and children in 2009
  • Professional development presented by Chris Boys, Ph.D., on FASD for 30 school counselors in 2012 and nearly 50 teachers through the Improving Teacher Quality Workshops in 2013 and 2014
  • Session for 60+ high school students at University on the Prairie in 2013
  • Collaboration with regional heath care system in preliminary study to extract FASD diagnoses in medical records in 2013
  • Assistance provided to MOFAS in their prevention and awareness efforts resulting in:
    • Montevideo Early Childhood applied for and received an awareness grant
    • FASD education and awareness activities at community and family events:
      • Shetek Medical Services Health & Fitness Fair
      • Murry County Central Family Fair (Slayton, MN)
      • Annual Parent Enrichment Seminar (Marshall, MN)
      • What Works in Prevention resource fair (Lamberton, MN)
    • Connections with higher education advisory staff in southwest Minnesota (Minnesota West and Southwest Minnesota State University) and pregnancy center (Worthington, MN)
  • Continuing consultation with Chris Boys, Ph.D., on an eventual FASD coalition for southwest Minnesota. Connections have been made with the Southwest West Central Service Cooperative and the Southwest Iniative Fund