Understanding FAS: From Pregnancy Risks to Lifelong Care

The umbrella term "fetal alcohol spectrum disorders" may serve to intimidate, but drilling down to its specific subtypes provides a clearer picture of the often lifelong physical, mental, behavioral, and neurodevelopmental disabilities that follow individuals with prenatal alcohol exposure. These subtypes are neurobehavioral disorder associated with prenatal alcohol exposure, alcohol-related birth defects, alcohol-related neurodevelopmental disorder, partial fetal alcohol syndrome, and fetal alcohol syndrome.¹

The resulting health challenge is great, according to Tara Anne Matthews, MD, FAAP, developmental/behavioral pediatrician and director, Fetal Alcohol Spectrum Disorders Program, Children’s Specialized Hospital, RWJ Barnabas Health (RWJBH), and Todd J. Rosen, MD, maternal and fetal medicine expert and chair of the Department of Obstetrics and Gynecology, Jersey City Medical Center, RWJBH, both of whom spoke to The American Journal of Managed Care^® (AJMC^®).

This article will approach a comprehensive overview of fetal alcohol syndrome by examining its pathophysiology and the crucial roles of prevention and early identification during pregnancy and drawing on both pediatric and obstetric expertise. It will also explore long-term diagnosis, management, and support delivered through screening, counseling, and multidisciplinary care that addresses the physical, cognitive, and behavioral challenges that span from childhood into adulthood.

Tara Anne Matthews, MD, FAAP | Image Credit: © Children’s Specialized Hospital, RWJ Barnabas Health

The Pediatric Diagnostic Landscape

The most severe form of fetal alcohol spectrum disorder, according to Matthews, is fetal alcohol syndrome—which is also 100% preventable and the most common known preventable environmental cause of intellectual disability in the Western world.² Fetal death is also possible with alcohol exposure.³

Strict diagnostic criteria are necessary in order to correctly deliver a diagnosis of fetal alcohol syndrome. The 3 facial features that must be present are a smooth philtrum, meaning a flat surface between the base of the nose and the upper lip⁴; a thin vermillion border, which demarcates your upper lip from surrounding areas⁵; and small palpebral fissures, or a shorter than average eye opening.⁶ In addition to these requirements, Matthews explains, the following must also be present:

• Documented growth deficits—“at some point in time, their head circumference, height, and weight, must be less than the 10th percentile,” she says
• Documented central nervous system (CNS) abnormalities, which can manifest in any number of ways, including a small head size, significant brain abnormalities visible on imaging, neurological problems not attributed to another cause, and significant developmental delays in at least 3 of the following domains: cognitive or developmental skills, executive functioning, motor functioning, attention/hyperactivity, social skills, sensory ability, pragmatic language, and memory
• Alcohol-related neurodevelopmental disorder
• Neurobehavioral disorder associated with prenatal alcohol exposure

There is no safe amount of alcohol to drink during pregnancy, and all major health organizations, including the World Health Organization and the CDC, maintain that alcohol use during pregnancy imparts significantly elevated risks of miscarriage, preterm birth, stillbirth, spontaneous abortion, various disabilities, and sudden infant death syndrome.^7,8 The reason for this strict recommendation is that every woman's genetics and ability to metabolize alcohol are different. What may be a seemingly harmless amount of alcohol, such as an occasional drink during pregnancy, for one woman could be teratogenic (cause developmental abnormalities) for another.

“The main problem is every woman’s genetics and ability to metabolize alcohol is different, so we cannot say that any alcohol during pregnancy is safe,” Matthews notes. “We do know, however, that the amount of alcohol consumed and its concentration are directly correlated with the extent of damage to the developing fetus.”

The timing of alcohol exposure is also critically important, she explained to AJMC, with the first trimester being the most vulnerable period, as this is when major organs and the brain are undergoing their most rapid development, and the developing fetus can be most severely affected, eventually exhibiting all of the physical features, growth deficits, and CNS abnormalities previously mentioned. Alcohol exposure in the second and third trimesters may not lead to the classic facial features or growth deficits, she clarified, but it can still cause significant learning disabilities and behavioral problems, underscoring the importance of abstinence at every stage of pregnancy.

Todd J. Rosen, MD | Image Credit: © Jersey City Medical Center, RWJ Barnabas Health

The OB/GYN Perspective

An expert on prevention and screening in a complex medical world, Rosen underscored the paramount role of the obstetrician in the prevention of not only fetal alcohol spectrum disorder but also fetal alcohol syndrome as well. Early identification of at-risk patients and compassionate, nonjudgmental counseling are the most effective tools, he told AJMC. This can be achieved by reviewing their medical history and records and asking them directly.

“It can be challenging to provide a timely diagnosis for pregnant women and secure subsequent treatment,” he said. “Despite awareness campaigns, there is a lack of knowledge regarding the risks of alcohol consumption during pregnancy, and some health care professionals are not comfortable with screening and intervention. Stigma surrounding substance use during pregnancy continues to be a barrier to prevention and treatment.”

The American College of Obstetricians and Gynecologists recommends several tools that have been validated for use in pregnancy and that incorporate knowledge gained from and elements of the Michigan Alcoholism Screening Test and CAGE Test, Rosen noted. He told AJMC about 2 of these preferred tests:

• T-ACE (tolerance, annoyed, cut down, and eye-opener): this contains variations of the following 4 questions^9-11:
  • Tolerance: How many drinks does it take to feel tipsy?
  • Annoyance: Have people annoyed you by criticizing your drinking?
  • Cut down: Have you ever felt you ought to cut down on your drinking?
  • Eye-opener: Have you ever had a drink first thing in the morning to steady your nerves or to get rid of a hangover?
• TWEAK (tolerance, worried, eye-opener, amnesia, K/cut down): this is similar to T-ACE, with 2 notable differences^12,13:
  • There is an additional question about blackouts/amnesia
  • Patients are asked if friends and relatives have expressed worry regarding the patient’s drinking

“The value assigned to each answer is totaled, and the patient’s score helps identify women who may need further assessment,” he says, “or support to reduce or eliminate alcohol consumption during pregnancy.”

Many women may also fear judgment or legal repercussions, which makes them hesitant to disclose their alcohol use, and not all pregnancies are planned—again emphasizing the public health implications that extend beyond the clinical setting.

Managing Lifelong Challenges and Advocating for Change

Matthews and Rosen concurred that the profound challenges children born with fetal alcohol syndrome face impact their ability to thrive over their lifetime. Although there is nothing specific to fetal alcohol syndrome, Matthews explained, these children may have cardiac anomalies or other brain or body anomalies with long-term effects, and many become adults who cannot support themselves because of their intellectual or learning disabilities, or they end up in trouble with the law. Add to this that these individuals may not have access to health care or coverage, “and that in turn means no preventative care and potentially more health problems,” she says.

“Obstetrician-gynecologists can help educate patients about the risks of alcohol exposure during pregnancy,” Rosen emphasizes, “and normalize open, nonjudgmental conversations about alcohol use with pregnant patients.”

The overall social and behavioral challenges are equally immense. Most teens who are born with fetal alcohol syndrome struggle with understanding social relationships and the concept of cause and effect, with many “lacking empathy and remorse for their behaviors,” which can make navigating relationships and peer interactions incredibly difficult. Early intervention can help, especially when it is delivered in a highly structured environment at home and at school. Speech and occupational therapy, counseling, and medication, if necessary, can also have a positive impact, “giving them a much better chance of succeeding in school and in life,” Matthews says

Addressing fetal alcohol syndrome and the totality of fetal alcohol spectrum disordersrequires an overall collaborative approach involving doctors, educators, and families, Matthews and Rosen agree. There is a particular lack of education about the risks of drinking during pregnancy at the middle and high school levels in some communities, Matthews says, and social determinants of health are known to contribute, too. Rosen notes the importance of health education classes that happen outside of the doctor’s office.

“Alcohol is cheaper than soda and some foods, and it can curb appetite for some people,” Matthews explains, “so if a pregnant woman doesn’t have enough food or money to care for herself, let alone her family or children, alcohol may be her only recourse for nourishment and to escape the stress of wondering how to care for her family.”

Ultimately, early intervention is key to mitigating secondary disabilities, prevention requires systemic change, and systemic solutions must be multipronged.

References

1. Understanding fetal alcohol spectrum disorders. National Institute on Alcohol Abuse and Alcoholism. Updated August 2023. Accessed August 6, 2025. https://www.niaaa.nih.gov/publications/brochures-and-fact-sheets/understanding-fetal-alcohol-spectrum-disorders
2. Lee K, Cascella M, Marwaha R, eds. Intellectual Disability. StatPearls Publishing; 2025. Accessed August 6, 2025. https://www.ncbi.nlm.nih.gov/books/NBK547654/
3. Fetal alcohol spectrum disorders FAQs. The American College of Obstetricians and Gynecologists. 2025. Accessed August 6, 2025. https://www.acog.org/programs/fasd/fasd-faqs#:~:text=Fetal%20Alcohol%20Syndrome%20(FAS):,How%20common%20is%20FASD
4. Smooth philtrum. National Library of Medicine/National Center for Biotechnology Information. Accessed August 7, 2025. https://www.ncbi.nlm.nih.gov/medgen/222980
5. Wattendorf DJ, Muenke M. Fetal alcohol spectrum disorders. Am Fam Physician. 2005;72(2):279-285.
6. Palpebral fissure, short. National Human Genome Research Institute. Accessed August 7, 2025. https://elementsofmorphology.nih.gov/index.cgi?tid=4ef1798e56a7ac262bd11806a6f8eceb
7. Drinking alcohol during pregnancy is harmful to the unborn child. World Health Organization/African Region. May 13, 2015. Accessed August 7, 2025. https://www.afro.who.int/news/drinking-alcohol-during-pregnancy-harmful-unborn-child
8. About alcohol use during pregnancy. CDC. May 16, 2024. Accessed August 7, 2025. https://www.cdc.gov/alcohol-pregnancy/about/index.html
9. T-ACE screening for alcohol use. Government of New Brunswick. November 2009. Accessed August 7, 2025. https://www2.gnb.ca/content/dam/gnb/Departments/h-s/pdf/en/Addiction/TACE-e.pdf
10. Using the T-ACE and 4P’s substance abuse screening tools with pregnant women. Norton Healthcare. October 30, 2020. Updated July 25, 2022. Accessed August 7, 2025. https://nortonhealthcareprovider.com/news/using-the-t-ace-and-4ps-substance-abuse-screening-tools-with-pregnant-women/
11. Sokol RJ, Martier SS, Ager JW. The T-ACE questions: Practical prenatal detection of risk-drinking. Am J Obstet Gynecol. 1989;160(4):863-870. doi:10.1016/0002-9378(89)90302-5
12. Tolerance, worried, eye-opener, amnesia, k-cut down (TWEAK) screening test. Agency for Healthcare Research and Quality. Accessed August 7, 2025. https://integrationacademy.ahrq.gov/resources/11326
13. Cyr MG, McGarry KA. Alcohol use disorders in women. Postgrad Med. 2002;112(6):31-47. doi:10.3810/pgm.2002.12.1363