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/

 

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.

 

My Baby’s Breath Program – A Treatment Plan for Expectant Alcoholic Mothers

As an Expectant Mother, your Blood Alcohol Content is the Same as your Baby’s.

My Baby’s Breath Program is a self-administered breathalyzer program that is implemented for pregnant women who are using alcohol. It is a program that provides monitored support including incentives to help women abstain from alcohol while they are pregnant or planning a pregnancy.

The breathalyzer works on the notion that the alcohol content of the mother is the same for the fetus while she is pregnant. A professional contact or other trusted, responsible adult determines the number of tests given per day to the mother, and daily and monthly reports are printed out to record the mother’s progress during pregnancy.

It was developed by Healthy Brains for Children, a nonprofit founded by Jody Allen Crowe, author of The Fatal Link and founder of Think Before Your Drink Program, which created the Pregnancy Test Dispensers to be placed in bars. Read more about My Baby’s Breath Program at this website:

http://www.healthybrainsforchildren.org/fetal-alcohol-education/babys-breath.html

Prevention Approaches in Australia

BSTS Blog Series: “Protecting unborn babies from alcohol-related harm”

Written by Nathalie P

Prevention Approaches in Australia

At first glance, it seems outrageous that children with FASD can’t have a normal life because their mother’s irresponsible decision to use alcohol during pregnancy. In some communities, the high prevalence rates of alcoholism and social pressures make alcohol abuse common during pregnancy. The “Lililwan Project” has been established to study the prevalence of FASD in Australia where rates are high among indigenous (aboriginal) populations. The project aims to help children with FASD by involving families, doctors, and teachers to address their unique learning and developmental issues. It also raises awareness about the dangers of drinking alcohol during pregnancy. These efforts have led to some aboriginal groups in Western Australia taking action to prevent FASD by successfully limiting the sales of hard liquor in their communities.

My question is – if small communities in Australia are able to get the message out that alcohol use at any point in pregnancy is dangerous, what is stopping us from spreading the word throughout the U.S.?

FASD Prevention = [Preconception Health] OR [Alcohol + Contraception]

BSTS Blog Series: “Protecting unborn babies from alcohol-related harm”

Written by Nathalie P

The author of this series of blog posts has been an intern with the Better Safe than Sorry Project this summer since graduating from high school in Montgomery County, Maryland. She is an incoming freshman at Syracuse University with plans to study journalism and possibly psychology. Over the summer, she has attended a number of the training sessions for the “BSTS Change Agents” and participated in a few BSTS talk show sessions as well as attending an all day workshop by the “Families Affected by FASD.”

My Perspectives about Dr. Rich

As a Better Safe than Sorry intern, I’ve had the chance to get to know Dr. Susan Rich personally and professionally. What I’ve learned about her is that a 21 year passion for Fetal Alcohol Spectrum Disorder (FASD) prevention and treatment has led to her recent decision to leave her successful private practice in child/adolescent and adult psychiatry to focus on diagnosing and treating kids with FASD. In 1993 after reading the Broken Cord, by Michael Dorris, Dr. Rich transformed her career – leaving pharmaceutical research to attend public health school then medical school and psychiatry training. Over the past 8 years, she has run a home-based clinical practice, providing hands-on work with general psychiatric patients as well as those affected by FASD – many of whom are adopted from Russia or former Eastern Bloc countries.

Though our community will miss Dr. Rich providing care to a wide range of psychiatric patients, it is great to see her taking on her passion for FASD full time. In many ways, she will inspire future generations of young adults like me to better understand and prevent this tragic condition.

Read Dr. Rich’s full statement in the CAPSGW newsletter Spring Summer 2014

FASD Prevention = [Preconception Health] OR [Alcohol + Contraception]

The Centers for Disease Control and Prevention (CDC) reports FASD is more prevalent than combined rates of autism, cerebral palsy, spina bifida, and Down’s Syndrome. The effects of prenatal alcohol exposure can cause seizure disorders, cerebral palsy, spina bifida, cleft lip/palate, as well as a various other “neurodevelopmental” disabilities. Due to these ailments, people with FASD are often unable to maintain gainful employment, are influenced by negative peer pressure, and socially alienated.  In other words, FASD is an epidemic, causing social problems, learning issues, intellectual disability, and other preventable disorders.  Many of these problems occur even before you know you are pregnant.

For this reason, the CDC has begun a national campaign on Preconception Health and Health Care in order to educate people on the importance of pregnancy planning and healthy lifestyles during “preconceptional” stages (http://www.cdc.gov/preconception/planning.html ).

The Better Safe than Sorry Project has a simple solution to FASD:

If you use alcohol – avoid pregnancy (CONTRACEPT), and if you are pregnant or possibly might be (i.e., not using contraception and sexually active) – avoid alcohol entirely.

See the following websites for more information:

Zero for Nine: http://www.healthvermont.gov/adap/049/

NOFAS: http://www.nofas.org/