Alcohol Embryopathy

Letter to the Washington Post Editor submitted 1/25/16 by Susan D. Rich, MD, MPH, DFAPA:

An article on January 18, 2016 in the Washington Post’s Health and Science section, “This mother drank while pregnant. Here’s what her daughter’s like at 43,” features a courageous mother, Kathy Mitchell, and her daughter Karli who should be applauded for their tireless efforts to raise awareness about this prevalent and preventable condition.  Over the past 22-25+ years, Kathy and Karli have done great work to raise awareness about FAS. Kathy is the renown spokesperson for and Vice President of the National Organization on Fetal Alcohol Syndrome.  Karli has worked diligently as a volunteer in the office, stuffing envelopes, creating artwork for their logos, and providing an optimistic outlook with her beautiful smile that lights up a room. She won the Presidential Points of Light Award for her volunteerism. Their story is depicted in my 2001 Documentary: Dispelling Myths about Alcohol-related Birth Defects:  http://www.susanrich.info/psychoffice/patient_myths.html.  

Unfortunately, the article perpetuates the myth that intellectual disability and other neurodevelopmental problems only occur in heavy drinkers and that effects of prenatal alcohol exposure are relatively uncommon.  Alcohol can cause a range of neurodevelopmental disorders – actually nearly every neurodevelopmental disorder of childhood can be caused by alcohol.  Here’s a chapter I co-authored in an International book on autism: http://www.intechopen.com/…/clinical-implications-of-a-link….  We’ve known since 1981 about an important “missing link” about prenatal alcohol exposure (from a seminal paper published by Dr. Kathleen K. Sulik at the University of North Carolina)  that neurodevelopmental disorders (brain damage) associated with prenatal alcohol exposure (ND-PAE) can happen with as little as 4-5 servings of alcohol in one “binge” episode as early as the 3rd week post conception.  This is actually the period of embryonic development, not fetal development.  So, the real term for babies with the facial features and severe deficits associated with prenatal alcohol exposure is “alcohol embryopathy.”

With 13.5% of childbearing age women binge drinking and 50% of pregnancies unplanned, inadvertent prenatal alcohol exposure before a woman knows she is pregnant means that not only alcoholic women are having babies with FAS.  In truth, not all affected children have the tell-tell signs of characteristic facial features, severe intellectual disability and growth deficiency like Karli.  As a child/adolescent and adult psychiatrist, I see first-hand the mood dysregulation, sensory and motor disorders, ADHD and executive functioning problems, and social communication delays caused by prenatal alcohol exposure. According to the Centers for Disease Control and Prevention, we have an epidemic of 1 in 20 school age American children with preventable brain damage caused by prenatal alcohol exposure.  Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE), the topic of my upcoming book – “The Silent Epidemic: A Child Psychiatrist’s Journey beyond Death Row,” may be among the most significant public health crises since polio.

For 23 years, I have asked this simple question:  Why has the alcohol industry not been held accountable for a failure to warn about this prevalent and preventable condition?  A small label on their products indicating risk for birth defects in pregnant women is too little too late in my opinion – since much damage has already occurred before a woman knows she is pregnant.  Pharmaceutical manufacturers, the tobacco industry, and other corporate megaliths have been called out for harm caused by their products.  Attorney Laura Riley and I recently addressed this question in a chapter in an international book on Legal/Ethical issues in FASD http://www.springer.com/us/book/9783319208657   Neurodevelopmental Disorder Associated with Prenatal Alcohol Exposure: Consumer Protection and the Industry’s Duty to Warn [Rich, Susan D. ​ and Riley, Laura J​.  Pages 39-47​;  ​Fetal Alcohol Spectrum Disorders in Adults: Ethical and Legal Perspectives. An overview on FASD for professionals. Editors: Nelson, Monty, Trussler, Marguerite (Eds.)].  My blog attempts to address the missing link by recommending that alcohol users prevent pregnancy not just stopping drinking after pregnancy recognition.  See http://www.bettersafethansorryproject.com.

 

Remember – if you drink alcohol and are of childbearing potential, avoid pregnancy (i.e., contracept or avoid sex). If you are pregnant or planning pregnancy, avoid alcohol.  The Centers for Disease Control and Prevention are now promoting our message – It’s better to be safe than sorry – alcohol and unprotected sex don’t mix!!! http://www.cdc.gov/media/releases/2016/p0202-alcohol-exposed-pregnancy.html.

 

FASD and the Responsibility of Men- a Father’s Fight for Appropriate Diagnosis and Treatment

Currently in the media, the celebrity Charlie Sheen is advocating for having his biological twin sons evaluated for Fetal Alcohol Syndrome. Despite his concerns, according to the article on TMZ Brooke Mueller, the children’s mother, refuses to have the boys tested and denies any symptoms. Sheen’s point is: “The kids have real issues and an FAS test could help in the treatment.”

Like Sheen, we believe appropriate diagnosis can help in proper treatment.  Early diagnosis and treatment can help the children with FASD in similar ways that an early diagnosis of autism, Asperger’s or ADHD can improve those children’s lives.  Sheen’s situation also provides another unfortunate though high profile example that FASD does not discriminate – it occurs in all social classes!  No one is immune to the effects of prenatal alcohol exposure.  

Men are responsible for unprotected sex, alcohol abuse, and pregnancy as much as a woman.  They should stop drinking during pre-conceptional stages (and during pregnancy for moral support) and encourage their wives and partners to do the same.

FASD and the brain-based approach: 1-day workshop, Falls Church VA, June 25

Hi everybody,

We would like to share this great opportunity with you to LEARN MORE about

caring for and working with individuals with fetal alcohol spectrum disorder.

SPONSORED BY FAFASD

Fetal alcohol workshop for caregivers+professionals, June 25 Falls Church VA

FASD/Other Neurobehavioral Conditions: A Brain-Based Approach

Workshop on caring for and working with individuals with fetal alcohol spectrum disorder

FASD is a brain-based physical disability with behavioral symptoms. The brain-based approach to living with, caring for, and working with individuals and families impacted by FASD acknowledges the source of behaviors: the brain, and provides a set of research-based best practices for helping people with fetal alcohol exposure, originally created by Diane Malbin of FASCETS.

This workshop is open to all parents and professionals working with or caring for individuals with diagnosed or suspected fetal alcohol exposure. 

June 25, 2014: Falls Church, VA. 9 a.m. to 4 p.m. Sponsored by FAFASD.
At Celebration Center for Spiritual Living, 2840 Graham Road, Falls Church VA 22042. Workshop for parents and professionals. Certificate of attendance issued at completion. 

Please see the website for full details. Registration is required.

 

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4 Families Seek to Confront, Understand FASD – a Touching Documentary Revealing the Impact of FASD on a Child

The last post was introducing us to 4 women and their life stories. This article is about their children:

The impact of FASD on the life’s of Serenity age 6, Jacob age 9, Elaine age 10 and Elijah age 8.

“A child with an FASD can suffer damage to parts of the brain that determine intelligence, memory, language ability, motor skills and senses like touch and hearing.” They can be hypersensitive to temperature, noise and/or touch. In most cases their disability is not visible, so in daily life people don’t notice it right away meaning they might not be able to provide the needed help or care e.g. at school.

Children with FAS or FASD sometimes display “dysmaturity”, meaning their emotional ages are much younger than their actual ages.

Heidi Case “It’s not always alcoholics who have these children with FASD,” she said. “It’s people like me who went on a cruise and had a little fun and now, not only are we paying for it as a family, but I have a son who is paying for it for the rest of his life. The hardest thing is just knowing that it won’t ever go away,” Heidi said. “It’s not a mental illness. It’s not something that can be fixed. It’s brain damage.”

The struggles they are going to face all through life could have been prevented. That’s a burden their mother’s have to carry on for their whole life.

It is a very interesting and touching article and a great overview of FASD.

To read the whole article visit http://www.adn.com/2014/02/24/3344493/a-silent-epidemic.html 

Prenatal Alcohol Exposure and it’s Consequences

Summarizing the article “A Neurodevelopmental Paradigm for Fetal Alcohol Spectrum Disorder

FASD as a preventable condition combined with a psychosocial history of witnessing or experiencing abuse can predispose individuals to early onset criminal behavior and, in many cases to violent and impulsive aggression. It can also predispose an individual to poor social and academic performance which might lead to school failure.

Links between FASD and criminal behavior

Prenatal Alcohol Exposure and the brain damage it causes can lead to deficit an affected individual in the following dimensions:

1. Impaired Neurocognitive Functioning

meaning an affected individual might suffer from learning and memory problems and might have deficits in executive functioning tasks like problem-solving, strategic planning, response inhibition, emotion and urge control and cognitive flexibility. A poor academic performance can lead to school failure.

2. Impaired Self-Regulation

meaning an affected individual can get easily provoked, frustrated, irritated and enraged.

3. Impaired Adaptive Functioning

meaning an affected individual might have arrested development in language skills, daily living skills, social skills and/or moral development.

New DSM Code Should Benefit Clinicians, Researchers

Individuals affected by prenatal alcohol exposure finally have a diagnostic code in DSM 5, “The Diagnostic and Statistical Manual of Mental Disorders”.

“We were pleased that DSM-5 introduced neurodevelopmental disorder associated with prenatal alcohol exposure (ND-PAE) in the category “Specified Other Neurodevelopmental Disorder” (315.8).”

“[…] we believe that by further defining ND-PAE as a neurodevelopmental disorder with its own diagnostic code, psychiatrists, epidemiologists, managed care organizations, and other systems of care will be able to quantify the numbers of affected individuals, develop standardized treatment protocols, and target primary-prevention strategies for this tragic and preventable condition.”

Read more at http://psychnews.psychiatryonline.org/newsarticle.aspx?articleid=1792237