FASD Awareness Day 2020

Tomorrow is the 21st anniversary of Fetal Alcohol Spectrum Disorder (#FASD) Awareness Day, with the first one held 09/09/1999. The day was envisioned by parents of a young woman in Toronto, Canada who was born with Fetal Alcohol Syndrome (#FAS) but not diagnosed until she was 20 years old and already had a child with FASD herself. Yet how many people even know what the acronym stands for much less what it truly means?

On the eve of this anniversary, an international group of 12 physicians and advocates from across North America and Europe, collaborating over the past 4 years, recently published an FASD treatment algorithm. The research paper provides hope that doctors and others in the health care arena will realize the benefits of diagnosis for more appropriate treatment. https://www.jptcp.com/index.php/jptcp/article/view/681/695

WHAT IS FETAL ALCOHOL SPECTRUM DISORDER?

Doctors often incorrectly assume that "diagnosis does not influence treatment" of affected children. Our paper provides insight that may help physicians and allied health care providers appreciate the importance of having a diagnosis in order to tailor treatment to avoid unintentional side effects, contraindications to certain underlying medical conditions, and prevent unintentional medication dosing errors.

FASD is an umbrella term used to describe the range of clinical, neurodevelopmental and neurobehavioral symptoms associated with prenatal alcohol exposure. Drinking as little as 4-5 servings in the late 3rd to early 4th week post conception is enough to cause the full blown Fetal Alcohol Syndrome (FAS). This is well before most women are aware they are pregnant, yet when the major organ systems, face, and brain are vulnerable to the effects of alcohol. While full FAS is characterized by certain abnormal facial features, atypical neurodevelopment, and growth problems, there is a range of FASD that may not involve the facial features or growth. Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (#NDPAE) affects a larger number of children and is "hidden in plain sight."

HOW MANY CHILDREN ARE AFFECTED?

This prevalent yet misdiagnosed and under-recognized condition affects 1 in 20 school aged children in the United States, Canada and Europe. Only 10-15% of affected children have the facial features and growth problems, whereas a majority (85-90%) have ND-PAE without the face. Many of these children get "labeled" with diagnoses such as ADHD, conduct disorder, Reactive Attachment Disorder, learning disabilities, behavior problems, and even autism spectrum disorder. As children, teens and young adults, they struggle to fit into a peer group, to complete schoolwork, to transition into the community effectively, and to learn basic life skills and social skills. As adults, many are relegated to the menial subsistence jobs, have difficulty maintaining relationships and employment, are adjudicated (approximately 60-80% are incarcerated by age 18), sex trafficked, become pregnant as teens, and/or have difficulty with mental illness or substance use issue.

HOW DOES ACEs/TRAUMA PLAY A ROLE?

A confounding problem for individuals with FASD is that many have been traumatized, either in their biological homes, in orphanages, or through the foster care system. Others are unwittingly traumatized through bullying, ill-informed parents (inaccurately thinking the child's behaviors are "willful") or inadequately trained teachers and paraeducators. I is estimated that as many as 25-50% of children in the US foster care system have undiagnosed (or misdiagnosed) FASD. A history of childhood trauma (Adverse Childhood Experiences, or #ACEs) is the second proverbial hit to neurodevelopment, with the third neurodevelopmental insult being child/adolescent onset substance use (e.g., use of marijuana, tobacco, alcohol/other drugs).

WHAT CAN WE DO TO STEM THE TIDE? Go upstream where the salmon are spawning.

In public health, there is a parable that goes like this: medical doctors and health care agencies stand along a river bank and pull babies out of the water. Well-trained public health professionals will see the babies floating in the river and turn to run upstream. The doctors and nurses shout - "Where are you going?" The public health team will say - "Upstream, to see who is throwing the babies into the water!"

In the case of FASD, doctors pull babies with FASD out of the alcohol-infused womb and save their lives in NICUs and SICUs as infants and toddlers. Larger hospitals are built with more NICUs and SICUs to meet the growing demand of babies born addicted and impaired due to prenatal alcohol (and drug) exposure. Allied health professionals and special educators go on to provide a costly host of special services to the children to improve their level of functioning but not entirely ameliorate their challenges. Psychiatrists and mental health professionals treat the plethora of problems the children have, only to have the children with FASD and ACEs to become adolescents revolving through residential treatment centers, substance abuse programs, mental health treatment. Many of them go on to become adults in the criminal justice system, community and state mental health system, homeless and domestic violence shelters, and other overburdened systems of care.

These children make up a relatively small (2-5%) of society, yet their difficulties have a large impact on our systems of care (i.e., infant deaths and morbidity, early childhood illness, foster care, school special education, homelessness, unemployability, incarceration rates, and other social services). If we truly cared about reducing the epidemic of FASD, we would do more to promote contraception and family planning for child bearing age alcohol consumers; to increase awareness about preconception care (use of multivitamins and abstinence from alcohol/tobacco/other drugs before conception); and reduce the numbers of alcohol licenses in communities of color where lack of access to health services make the issues even more magnified.

I vote for: 1) increased access to contraceptives; 2) information about preconception care, FASD, and family planning during 7th & 8th grade health classes (if not sooner): 3) limiting the numbers of beer/wine/liquor stores within a certain geographic radius; 4) mandating that alcohol manufacturers, distributors and advertisers be required to publicize that "ALCOHOL IS A NEUROTERATOGEN. This means it causes neurologic, mental, emotional, as well as physical problems before you may know you are pregnant. SEXUALLY ACTIVE ALCOHOL CONSUMERS MUST USE RELIABLE CONTRACEPTION TO PREVENT UNINTENDED EXPOSURE OF PREGNANCIES TO THESE PRODUCTS."

There is a precedent in the field of medicine for preventing unintended exposure to medications that may cause birth defects. Young women prescribed are required to have 5 negative pregnancy tests and be on a reliable contraceptive before being prescribed medications containing retinoic acid derivatives (Accutane/Retinol). Think about it, the solution to preventing prenatal alcohol exposure, a costly societal conundrum, is as simple as a contraceptive... IMAGINE!

For more information about this topic, please check out: "The Silent Epidemic: A Child Psychiatrist's Journey beyond Death Row." www.prenatalalcoholexposure.com; Twitter: @SusanDRichMD