March 3 – Birth Defects Awareness Day

With today being Birth Defects Awareness Day, I decided to reduce the price of my book about the leading preventable cause of physical and functional birth defects – our social drug of choice: alcohol.  My book is The Silent Epidemic: A Child Psychiatrist’s Journey to Death Row – Understanding, Treating and Preventing Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure.  Though I had the book in my heart and mind to write for the first 20 years of my journey, I put pen to paper in December 2012 in the aftermath of the Sandy Hook tragedy in Connecticut.  The book is my hope to provide the science about how alcohol-related birth defects happen and illuminate society’s duty to the 5-10% of American children who are affected by the $220 billion dollar product of the Big Alcohol industry.

As a former pharmaceutical researcher, I know first hand what it takes to get a drug approved – from bench science through clinical trials and FDA approval.  Even life-saving cancer drugs would not be allowed to cause brain damage in children.  If a woman needs to be on a chemotherapy drug before she has children, often she’ll be given the opportunity to freeze her ovaries to avoid mutations in the eggs.  For acne medications created from Vitamin A derivatives (Retin-A, Accutane),  dermatologists will put childbearing age patients on contraceptives and conduct a pregnancy test before they give the patient their monthly prescription.  The patients also sign a waiver that they will not become pregnant.  It is very easy to prevent birth defects if a person needs a medication – contracept!

Many years ago, I was awarded a small grant from the March of Dimes to produce a preconception health information brochure for the Iroquois community.  The brochure, “Planning for the 7th Generation,” is a culturally relevant brochure for Native American men and women to become educated that birth defects happen as early as the first few weeks after conception.  Preconception health includes healthy nutrition, exercise, multivitamins, sleep, and avoiding alcohol/tobacco/other drugs of abuse as well as minimizing stress.  Even though being healthy during the few months prior to pregnancy doesn’t guarantee a healthy baby (or even that you’ll get pregnant), we can reduce exposures and improve the chances of a healthier outcome.  Preconception health is for both women and men!

Since most major organ systems, the skeletal system, and the nervous system has rapid development in the first 8 weeks after conception, physical birth defects occur very early during pregnancy – before most women know they are pregnant. In addition to physical birth defects, “neurotoxins” can cause “teratogenesis” (the origin of birth defects) of the brain and nervous system.  These chemicals are known as “neuroteratogens.”  Heavy amounts of alcohol early in pregnancy can cause physical birth defects such as cleft lip or palate, “lazy eye,” inner or outer ear defects, joint deformities, and unusual but subtle changes of the face (asymmetry, wideset small eyes, thin upper lip, small head, etc.).  As little as 4-5 drinks in one sitting as early as the 3rd week after conception can cause mild to moderate brain damage (“functional birth defects”), leading to learning disabilities, executive functioning problems, attention deficits, social communication issues, and a variety of other “neurodevelopmental” disorders.  Children can have sensory issues ranging from hypo- to hyper-sensitivities of hearing, seeing, smelling, tasting, touching, vestibular, propriocetion, or interoception. Most women don’t know they are pregnant when many of these problems are starting to happen!

The solvent ethanol dissolves the fatty insulation around neurons and kills neurons as they are migrating in the embryo to become the brain and nerve cells communicating between the body and the brain.  These changes begin to occur very early in the 2nd to 3rd week after conception.   One of the major problems affected children have is being unable to regulate their emotions and having difficulty managing their discomfort.  As babies, they are difficult to soothe, have difficulty suckling (due to nerve damage going to the facial muscles, lips, tongue, mouth, and throat), and have problems with sleep-wake cycle, developmental delays, and poor “attachment” behaviors. As toddlers and children, they are easily frustrated, overstimulated, overwhelmed, sensitive, and can have rages that are provoked by very minimal provocation. They also may have speech/language disorders, fine/gross motor or coordination problems, difficulty learning to read or do math, and other issues achieving age appropriate tasks.  Parents feel they are “walking on eggshells” to avoid the “land mines” that will set off the child’s “Hulk attacks” and may become so traumatized by the child’s “fight or flight” reactions that they develop symptoms of post traumatic stress disorder.  As their brains go through changes of adolescence, they may develop gender dysphoria, worsening mood/anxiety problems, and difficulties relating to their chronological age peers.

The beautiful image of the baby immersed in a frosted glass of beer with the umbilical cord wrapped around and inserted in the bottle of beer was created by the award winning artist, Angela Mele.  Many of the websites, logos and books written about prenatal alcohol exposure depict a baby in a bottle of alcohol, wine or beer.  In many ways, I wanted to open the bottle and share this knowledge with alcohol consumers instead of it being a “message in a bottle.”  Angela used her creative intuition to paint a picture of a well developed infant that looks relatively normal to depict the “hidden” damage to the baby in the womb.  Only 10-15% of the children have any visible signs of the full Fetal Alcohol Syndrome, which includes the facial features, small size, and neurodevelopmental problems.  A majority have brain damage invisible to the naked eye but detectable as developmental disabilities, learning disabilities, and other deficits on neuropsychological testing.

Even though most parents of toddlers or school age children would not connect prenatal alcohol exposure with the learning, mood, motor, social skills, or attention problems their child may eventually develop, science teaches that these problems begin within the womb as early as the first few weeks after conception.  There is much to be learned from dentists who taught children to brush and floss to prevent cavities.  So too can we psychiatrists teach patients to avoid cavities in their offsprings’ brains by deciding if and when to become pregnant, contraception until ready or able to become healthy, and preconception planning to prevent birth defects.

Please share this article with anyone you know who drank during their pregnancy and has a child with neurodevelopmental problems. By improving the parenting strategies, early and accurate diagnosis, academic supports, and appropriate treatment, the child can grow into a healthy, happy individual with adequate life skills and social supports to live a fulfilled, meaningful life.

Resources:

https://www.cdc.gov/ncbddd/fasd/facts.html

http://www.lulu.com/spotlight/TheSilentEpidemic

https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/fetal-alcohol-spectrum-disorders-toolkit/Pages/default.aspx

https://store.samhsa.gov/shin/content/SMA13-4803/SMA13-4803.pdf

https://www.niaaa.nih.gov/research/major-initiatives/fetal-alcohol-spectrum-disorders

https://www.acog.org/About-ACOG/ACOG-Departments/Tobacco–Alcohol–and-Substance-Abuse/Fetal-Alcohol-Spectrum-Disorders-Prevention-Program

http://www.oregon.gov/ode/educator-resources/2016fallconference/fasd.pdf

https://www.nofas.org/

 

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.

 

Copyright © 2014 Families Affected by Fetal Alcohol Spectrum Disorder, All rights reserved.
You’re getting this email because we know you love, work with, or help individuals impacted by fetal alcohol spectrum disorder.Our mailing address is:

Families Affected by Fetal Alcohol Spectrum Disorder

395 Bill Thomas Rd

MoncureNC 27559

Add us to your address book

unsubscribe from this list    update subscription preferences

Email Marketing Powered by MailChimp

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.