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/

 

Nature versus Nurture – or Both!

As a child psychiatrist specializing in children with prenatal alcohol exposure – many of whom have been adopted from foster care, I was struck by the number of basic human needs this innocent little boy wrote for his Christmas list. It seems strikingly similar to Maslow’s hierarchy of needs:  food/clothing/shelter; safety and security; love, belonging and connection to community; self-actualization/self-esteem (meaning and purpose); and finally, enlightenment.

Like the boy whose biological father and step-monster chained him intermittently for three months in a 2’x2’ bathroom closet (http://www.oprah.com/oprahshow/claytons-survival-story), the fact that children are forced into such deprived and inhumane circumstances is a human rights issue of the highest priority.

Our great nation has helped cure nearly every communicable disease on the planet and many rare and deadly cancers. Surely we can all agree on how to fix the #childwelfare crisis and end the cycle of #abuse.

After all, we do not inherit the earth from our ancestors, we borrow it from our children.

www.prenatalalcoholexposure.com

Taking Farm Animal Therapy to Lithuania

Last fall, I was honored to have a pediatrician and her husband, a neurologist, from Lithuania visit Dream Catcher Farm to learn more about our therapeutic farm animal sanctuary for children with Fetal Alcohol Spectrum Disorder (FASD) / Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE).  They spoke about their challenging work moving Lithuanian children from orphanages into foster care homes in the community.  Unfortunately, many foster families are unable to care for the children who have short attention spans, are impulsive, are triggered into “fight or flight” (emotional reactivity) very easily, are sensitive to ordinary environmental stimuli and have difficulty learning new information.   As a result, many children are returned to the orphanages. After I explained the 4 domain model of working with these children and told them about a novel program for women and their dependent children in North Carolina, they returned to Lithuania with renewed hope for families suffering from alcohol abuse.  Little did I know they would be sending me to Lithuania this fall to help build a farm program.

Parenting children with FASD/ND-PAE can be frustrating, overwhelming, and nearly impossible for those who are not trained to understand that these children can’t follow directions, and perform daily activities without continuous reminders and prompting.  They also have difficulty attuning to parents and caregivers because of wiring differences. It turns out that children respond well to and are eager to learn how to care for animals.  Farm animal therapy incorporates gentle stroking, petting, cuddling, and grooming animals in addition to feeding and watering them daily.  Hand raised animals like mine are eager to be touched, nurtured, and cared for and seek people out rather than running away.  For this reason, children are drawn to the gentle goats, rescue pig, and barn cats at Dream Catcher Farm.

On their return to Lithuania, the visiting physicians said, “We have children and we have animals.”  Yet what the idea they developed was to put the entire family on a farm with a farming family who would give the parents meaning and purpose living a substance free life, allowing the children to remain in their family of origin.  I feel blessed though maybe a little naive that  my farm may inspire others like it to help children with prenatal alcohol exposure and their families live happier, healthier lives.

http://www.hpenews.com/life/former-archdale-resident-expands-work-with-children-prenatally-exposed-to/article_21a9e4b2-8bf6-11e7-9200-6f73d686f4eb.html?utm_medium=social&utm_source=twitter&utm_campaign=user-share

Guest of Potomac-Bethesda Rotary

brian-feldman-susan-rich-bob-fuhrman-aruna-miller-091516-dsc_0635

Pictured from left to right: Senator Brian Feldman, Susan Rich, Bob Fuhrman – Rotary Pres., and Representative Aruna Miller.

It was a remarkable honor to speak last night to the prestigious group of service-oriented citizen members of the Potomac-Bethesda Rotary Club.  As a public health entrepreneur, I’m grateful to have the support of State Senator Brian Feldman and District 15 Representative Aruna Miller, who attended the Rotary club dinner presentation about my new book – The Silent Epidemic: A Child Psychiatrist’s Journey beyond Death Row.*   Sharing my journey with these remarkable legislators and the imminent Rotary scholars and community leaders was truly humbling.

My main points were to let them know much about the public health warnings and efforts leading up to Prohibition, and the reasons why our society seems deaf to the damage caused to our future generations from a chemical so ubiquitous as alcohol.  None of the Rotarians knew that as little as 4-5 standard servings of beer, wine or liquor exquisitely timed late in the 3rd week post conception can cause the Fetal Alcohol Syndrome (FAS), or that only 10-15% of children with effects of prenatal alcohol exposure have the identifiable facial characteristics.  They also didn’t know that a Long Island Iced Tea contains nearly 1.5 times the amount of alcohol (6 shots, no tea) to cause FAS.  Since 50% of U.S. pregnancies are unplanned and 13.5% of childbearing age women drink alcohol, we have an epidemic (1 in 20) of affected school-aged children in this country.

They were  dismayed that future generations could be impacted by a process known as “methylation” – the addition of “CH3-switches” placed on DNA’s histone proteins to interfere with the process of translation of the DNA/RNA into protein.  Not only is a child’s neuronal wiring affected by a mother drinking alcohol (i.e., killing the progenitor brain cells that will form important structures of the midline especially), the child’s gonads are affected (their “germ cells” – eggs and sperm) by effects of methylation.  This process affects future generations – even if the mother does not drink.  Since it takes 3 months for the process of spermatogenesis (sperm development) in the male, his use of alcohol can also potentially “methylate” his sperm DNA.   These permanent switches created by preconceptional alcohol exposure are transmitted for generations into the future. Thus, conditions such as alcoholism, chemical dependency, anxiety disorders, and neurodevelopmental disorders are carried down generation after generation – silently within the replication process of DNA.

The fact that most people don’t know that their children and grandchildren may be affected by their inebriated sperm is a problem our society should begin to face. The Better Safe Than Sorry Project, as well at the CDC and the US Surgeon General, recommend for alcohol consumers to avoid alcohol if pregnant or planning pregnancy (for males, this should be 3 months prior to conception); and to avoid pregnancy (i.e., contracept) until they are ready to abstain from alcohol.

In an effort to stem the tide of unintentional prenatal alcohol exposure (and prior to pregnancy recognition), we are hoping to work with the state legislature this fall on a state bill to require “point of purchase” messaging where alcohol is sold.  Forty-one states already have such signage, indicating that those who are pregnant or planning to be should avoid alcohol.  I would hope that we Marylanders would go one step further with an additional statement – “Alcohol consumers should avoid pregnancy (i.e., contracept), since problems can occur with exposure before knowing one is pregnant.”

Remember – alcohol and unprotected sex don’t mix!

*http://www.lulu.com/spotlight/TheSilentEpidemic; http://www.PrenatalAlcoholExposure.com.

We welcome comments from readers about this blog, as well as any others.

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.

 

BSTS Talk Show – FASD Awareness Day

What’s the best way to promote awareness about ND-PAE?

Join us as the BSTS interns discuss last years FASD Awareness Day, where they kicked of the condom campaign by passing out condom bookmarks at the Barking Dog Bar in Bethesda, MD. This was to promote awareness of the dangers of prenatal aochol exposure even prior to pregnancy recognition.

If you are planning a pregnancy, avoid alcohol, and if you are drinking alcohol, avoid pregnancy!!

BSTS Talk Show: APA Conference

On May 20th Dr. Rich, Dr. Parnell and intern Sydnie Butin presented at the 168th APA Annual Meeting. Intern Lauren Grenier, Brian Philcox and Bonnie Buxton presented on the panel discussion. The Better Safe than Sorry presentation by Sydnie Butin included how this project got started. Our main focus is prevention, this disorder is 100% preventable. She discussed how high school drinking habits are the starting point of later college and adult life drinking habits. The Behavioral Risk Factor Surveillance Survey and Young Risk Behavior Survey from 2011 show that 45% of 9th graders binge drink, 50% of 10th graders binge drink, 58% of 11th graders binge drink, and 62% of 12th graders binge drink. One binge drink is considered to be 4-5 drinks in one sitting. If this many people binge drink at such a young age, it is less likely for them to decrease or change their drinking habits, as they get older.

Girls have the belief that they can “keep up with the boys” when they drink but this is false. Women have half the alcohol dehydrogenase enzymes than men do. So the blood alcohol concentration gets much higher, much faster. Alcohol has a similar half-life in breast milk as it does in blood. Therefore it is not only necessary to stay away from alcohol during the preconception period and the pregnancy period, but women should also stay away from alcohol while they are breast-feeding. We believe that women should avoid alcohol altogether rather than trying to predict when the alcohol is going to be metabolized. Would you put alcohol in your baby’s bottle? No. There is no safe amount of alcohol for a baby, therefore women should stay away from it at all times during preconception, pregnancy, and lactation.

Excessive alcohol use can lead to impaired judgment, which can lead to unprotected sex and possible pregnancy. Keeping in mind the time difference between conception and pregnancy recognition, if you are one of those people who drinks to black out, your baby could get the full effect of the alcohol and receive irreversible brain damage.

To find out more about the APA Conference, watch our new BSTS talk show here: