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Changing Lives by Better Recognizing Children with Fetal Alcohol Exposure

Carol Cohen Weitzman, MD, FAAP
September  21, 2017

J” was 8 years old when his adoptive family first brought him to me for consultation, suspecting he might have Attention Deficit Hyperactivity Disorder. He’d been born premature and treated for neonatal abstinence syndrome, withdrawal symptoms from drugs his birth mother took. At age four, he was removed from his biological parents by Child Protective Services for severe neglect and placed in foster care.

Prior to placement with his adoptive parents when he was 6, J lived in three different foster homes removed from each because they found him “difficult” and “explosive.” His adoptive family welcomed J but struggled to understand him and his own struggles in so many areas. Upon probing, it became clear that his prenatal substance exposure went beyond drugs and that he’d been exposed to a significant amount of alcohol in the womb.

Many questions filled my mind as I completed this evaluation. How was it that, by 8 years of age, this diagnosis had not been made for a child with unmistakable features and characteristics of Fetal Alcohol Syndrome? Would this diagnosis add to his care? How would the family receive this news? 

Unfortunately, the stigma associated with asking pregnant women or mothers about prenatal alcohol use, fear of labeling a child, and assumptions that making a diagnosis will not change care often interferes with properly diagnosing children with Fetal Alcohol Spectrum Disorders (FASD). As a result, these children often miss out on interventions that can help manage their symptoms and minimize their lifelong impact.

J was among an estimated 40,000 babies born each year with FASDs, the most common preventable cause of youth neurodevelopmental problems and occurring in anywhere from 2 percent to 5 percent of children. The cost to the United States to care for children with FAS alone is over $4 billion annually.

This is the recurring story of vaccine preventable diseases.

- See more at: https://www.aap.org/en-us/aap-voices/Pages/We-Can%27t-Let-Our-Guard-Down-Against-Vaccine-Preventable-Diseases.aspx#sthash.196pj2e8.dpuf

In the mid-1980’s, the vaccine for HIB was released and thirty years later we no longer see this disease. Because of the effectiveness of this vaccine my younger partners only know of HIB meningitis through textbooks (and some of my anecdotes).

This is the recurring story of vaccine preventable diseases.

- See more at: https://www.aap.org/en-us/aap-voices/Pages/We-Can%27t-Let-Our-Guard-Down-Against-Vaccine-Preventable-Diseases.aspx#sthash.196pj2e8.dpuf

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The majority of affected children do not have the most visible signs of Fetal Alcohol Syndrome, distinctive facial features such as a flat midface, thin upper lip and short nose "

Centers for Disease Control and Prevention (CDC) Behavioral Risk Surveillance System data reveal circumstances fueling FASD rates. One in 10 pregnant women report consuming alcohol at some point during their pregnancy, for example, and 1 in 33 reported binge drinking in the past 30 days. In addition, nearly 1 in 5 non-pregnant women of childbearing ages reporting binge drinking in the same period a concerning statistic with nearly half of pregnancies in the United States unplanned. This is why every national organization with an interest in the wellbeing of babies has advocated for no alcohol consumption by women who are pregnant or trying to become pregnant.   

The majority of affected children do not have the most visible signs of Fetal Alcohol Syndrome, distinctive facial features such as a flat midface, thin upper lip and short nose. Alcohol affects the developing fetus at all stages of pregnancy, and there are many factors that influence the extent of its impact. This includes the amount consumed, the timing of exposure during pregnancy, maternal and fetal metabolism, maternal age and nutrition, smoking, other drugs that may be consumed at the same time.

The neurobehavioral and neurocognitive symptoms for children with FASD range from relatively mild developmental delays to severe intellectual disability, although most (75 percent) of individuals with an FASD do not have intellectual disability. Many areas of functioning are often affected, including learning, memory, executive functioning, behavior and mood, social skills, and adaptive functioning. These problems can be worsened and last a lifetime when an FASD is not diagnosed and treated. 


"​FASD is a preventable disorder with significant lifelong consequences – and one where pediatric intervention can have tremendous impact."

September is FASD Awareness Month, a perfect opportunity for pediatricians to enhance their knowledge of FASDs, consider an FASD when a child presents with complex developmental and behavioral problems, and begin screening for prenatal alcohol exposure (PAE). There are no well-validated screens designed to ask about past consumption of alcohol, but asking the following two questions can help determine the likelihood of significant PAE.

  1. “In the 3 months before you knew you were pregnant, how many times did you have 4 or more alcohol drinks in a day?”
  2. “During your pregnancy, how many times did you have any alcohol?”

The American Academy of Pediatrics (AAP) has developed a toolkit to assist primary care providers in identifying children with an FASD and managing their challenges in an effort to reduce the lifelong adverse consequences.

When I sat with J’s parents to discuss the diagnosis of FAS, their first reaction was relief. The diagnosis helped them understand that some of his behaviors were not due to being oppositional or deceitful, and that there were things they could do to help.

During a follow-up visit, J continues to struggle with learning problems, issues of attention and self-regulation, and disinhibited social interactions. But he is getting the right assistance from school, therapists and his family. He is happy and thriving and loved.

FASD is a preventable disorder with significant lifelong consequences – and one where pediatric intervention can have tremendous impact.

The views expressed in this article are those of the author, and not necessarily those of the American Academy of Pediatrics. ​​​


​​​Ab​out the ​​Author

Carol Cohen Weitzman, MD, FAAP, Director of Developmental-Behavioral Pediatrics and a Pediatrics and Child Study Center Professor at Yale School of Medicine, is the AAP District 1 FASD Regional Education and Awareness Liaisons Champion. She chairs the academy's Executive Committee for the Section on Developmental and Behavioral Pediatrics and was lead author of the AAP clinical report, "Promoting Optimal Development: Screening for Behavioral and Emotional Problems," as well as an author of the Pediatrics special article, "Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure."

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