Dispelling Myths About Alcohol Related Birth Defects – A Documentary

@NOFAS_USA @USAlcoholPolicy @ucsdcbb @AlcoholPolicy @CDC_NCBDDD Dispelling Myths about #Alcohol-related #BirthDefects is a #Documentary film of #FASD #NDPAE researchers providing compelling evidence about the harm of alcohol use during reproductive years. https://bettersafethansorryproject.com/2014/01/29/dispelling-myths-about-alcohol-related-birth-defects/

Better Safe Than Sorry -

If you are pregnant or planning a pregnancy, avoid alcohol. If you are using alcohol, avoid pregnancy. Alcohol and unprotected sex don’t mix!

This is a 40 minute documentary produced by the University of North Carolina Bowles Center for Alcohol Studies in 2001 with funding from the Centers for Disease Control and Prevention.

Interviews with leading scientists and researchers in the field of Fetal Alcohol Spectrum Disorder provide compelling evidence to clarify the controversies about alcohol use among childbearing age women.

http://www.youtube.com/watch?v=3TnYC7KtM34

View original post

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/

 

Kaiser Permanente California Pediatric Grand Rounds

“The Silent Epidemic of Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE)”
Pediatric Grand Rounds – Susan D. Rich, MD, MPH, DFAPA 
Wednesday, February 21, 2018 
12:30 -1:30p – SMOB LL A/B
WebEx Recording Link
PLAY RECORDING (1 hr 8 min)
https://kponline.webex.com/kponline/ldr.php?RCID=4333df8ba428d533275a9f833a28749e
Recording password: (This recording does not require a password.)

Earlier this week, I had the rare opportunity to present Pediatric Grand Rounds on Fetal Alcohol Spectrum Disorder (FASD) – described in DSM-5 as Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure (ND-PAE) at the “mother ship” hospital of Kaiser Permanente in the East Bay area of California.  Dr. Margaret Desler, Chief of Continuing Medical Education, said it’s the first time in the past 10 years that she’s been in her position that Kaiser has had a CME on the topic.  What an honor!  The presentation was sent via WebEx to the Department of Psychiatry at other sites as well.

With as many as 5-10% (up to 1 in 10) school age children affected by prenatal alcohol exposure, this epidemic of mild to moderate brain damage is hidden behind terms of “learning disabilities,” ADHD, sensory integration issues, mood dysregulation disorder, some instances of autism spectrum disorder (see O’Malley and Rich, 2012), and a myriad of adult psychiatric diagnoses.  One of the biggest problems we as child psychiatrists and pediatricians face is the “cliff” that we send our patients off to as they transition into adulthood.  A big problem for transitional age individuals with neurodevelopmental disorders (e.g., IDD, autism, FASD/ND-PAE) is that their services decrease dramatically in the adult system of care and there are limited adult providers with subspecialty training in NDs; hence, patients are seen as having “outgrown” their childhood diagnoses.  For these reasons, in the adult system of care, patients who had lifelong supportive services through Individualized Educational Plans, Wrap-around Services, and “supported housing” in their parents’ homes are left to fend for themselves.  As a result, they miss appointments, are unable to keep track of medications, misplace prescriptions, and/or have other reasons for seeming “noncompliant.”

I encourage parents of my patients with NDs to seek out guardianship shortly after they turn 18.  This is a long-term preparatory process for the patient and their family to get to the point that they realize that the young adult will need more systems of care brought to bear than sometimes is affordable to them with a low wage job.  By recognizing their ability to work in a meaningful way, providing a sense of purpose to their lives, they can be a more productive, autonomous member of society, albeit with supports.  They can also self-advocate to let adult clinicians know that they have “neurodevelopmental” disorders stemming from brain damage (i.e., faulty brain wiring) rather than garden variety “mental illness.”

Hopefully this will be the first in a series of talks to inform Kaiser physicians about this important issue affecting so many of our Nation’s children.  By early intervention and services through adulthood, there is hope that individuals with FASD/ND-PAE can have improved outcomes and better quality of life than without the diagnosis.  I am currently working with a 17 Emmy Award Winning Health Education Documentary Producer, Tom Conrad, to produce a CME and patient education materials about this prevalent, preventable, and misunderstood condition.

Here are a list of some of the American Academy of Pediatrics resources on FASDand related topics available on the AAP, Pediatrics, and PubMed websites. They include clinical reports, special articles, and policy statements.

 FASD Toolkit: aap.org/fasd

AAP Clinical Reports and Special Articles

o   Fetal Alcohol Spectrum Disorders

o   Neurobehavioral Disorder associated with Prenatal Alcohol Exposure (special article)

o   Caring for Patients with Prenatal Alcohol Exposure: A Needs Assessment

o   Families Affected by Parental Substance Use

o   Promoting Optimal Development: Screening for Behavioral and Emotional Problems

o   Substance Use Screening and Brief Intervention Implementation Guide

For more information about FASD programs through the AAP, contact:

Josh Benke; Program Manager, Fetal Alcohol Spectrum Disorders
jbenke@aap.org | 847/434‐7081
Rachel Daskalov; Manager, Screening & Public Health Prevention Programs
rdaskalov@aap.org | 847/434‐7863

As a result of this education, participants will be able to:

  1. Inform clinicians about prevalence of intellectual and neuropsychiatric sequelae of prenatal alcohol exposure, affecting up to 1 in 10 (5-10%) of school aged children in the US.
  2. Review a screening and diagnostic tool for Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure.
  3. Highlight a 4-domain model for evaluation and treatment planning (i.e., social/communication, neurocognitive, sensory & motor, and mood regulation/autonomic arousal).
  4. Provide preconception health and contraceptive approaches for alcohol consumers to prevent prenatal alcohol exposure in practice settings using neuroteratology education.Disclosure:

    The Kaiser Permanente East Bay Oakland Medical Center has determined that the speakers and the planning committee for this program do not have affiliations with any corporate organizations that may constitute a conflict of interest with this program.  Kaiser Permanente does not endorse any brand name products.

    East Bay Area – Oakland is accredited by the Institute for Medical Quality/California Medical Association (IMQ/CMA) to provide continuing medical education for physicians.

    East Bay Area – Oakland designates this live activity for a maximum of1.0 AMA PRA Category 1 credit(s)TM.. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

    Nurses may report 1 hour of credit towards the continuing medical education requirements for license renewal by the California Board of Registered Nurses.

Questions?

Contact Sheila Drennen, Quality Specialist – Continuing Medical Education, at 510-752-6389 or sheila.g.drennen@kp.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

Global Prevalence of Prenatal Alcohol Exposure – A Call to Action

Let’s congratulate and commend Tracey W Tsang and Elizabeth J Elliott on their important publication of “High global prevalence of alcohol use during pregnancy and fetal alcohol syndrome indicates need for urgent action” in The Lancet, [http://www.thelancet.com/journals/langlo/article/PIIS2214-109X(17)30008-6/fulltext].  This publication mirrors the historical, epidemiological, and societal implications presented in my book, “The Silent Epidemic:  A Child Psychiatrist’s Journey beyond Death Row – Understanding, Treating and Preventing Neurodevelopmental Disorder associated with Prenatal Alcohol Exposure” [www.prenatalalcoholexposure.com]; as well as a an international book chapter in Fetal Alcohol Spectrum Disorders in Adults: Ethical and Legal Perspectives [https://link.springer.com/chapter/10.1007/978-3-319-20866-4_3].  The authors clearly call for global paradigm shifts in public perception of alcohol’s effects on society – through advocacy efforts, the media, the alcohol industry, advertising and public policy.
 
I have just returned from Vilnius and Alytus, Lithuania where I gave two lectures daily for three days to large audiences of clinicians, social workers, public health professionals and policy makers (as well as the entire class of first year medical students at the Medical University of Vilnius) about this topic.  Here is a video of the talk at the Ministry of Health to a multidisciplinary group of professionals in the Center for Mental Health [https://www.youtube.com/watch?v=ZNc_RL5Z5Vo].  The introductions were given by the Director of Mental Health for the Ministry of Health who spoke about the epidemic created by alcohol abuse during the former Soviet occupation of the Baltic country.  I was moved and impressed by the city of Alytus’s efforts to end the mass institutionalization of children from alcoholic families, opting instead to offer the entire family therapeutic care with farming families where they are allowed to live in a safe, agrarian setting while learning adaptive functioning skills and vocational skills as well as parenting training.  [My trip was sponsored by a nonprofit family foundation dedicated to improving the lives of Lithuanian children.]
 
In my humble opinion, a medical journal as world renown as The Lancet taking on this issue will surely help awaken others to the devastation on developing brains caused by our western society’s social drug of choice: alcohol.  Just as the British Parliament took on the Gin epidemic in the 1750s, so too can our modern societies choose to urge doctors to encourage their patients (both male and female) to contracept if using alcohol.  After all, these problems occur as early as the 3rd week post conception – well before many know they are pregnant.  Methylation effects to sperm DNA occur up to three months prior to conception, and are transmitted through histone modifications for generations, resulting in familial anxiety, depression, addictive disorders, obesity, and a plethora of other conditions hidden within our tightly wound genome. 
There is no excuse that alcohol is allowed to cause 1 in 20 American children to be born with preventable neurodevelopmental deficits, deformities, and lifelong lost potential.  If the solvent ethanol was as important to mankind as a life-saving antitumor medication, it would not be allowed to cause 1 in 1,000 babies to be born each year with brain damage and birth defects.  We prescribe contraceptives and pregnancy testing to all patients receiving pharmaceuticals that have any potential for causing negative reproductive outcomes.  Just as condoms are promoted for HIV prevention, let’s agree that alcohol and unprotected sex don’t mix and promote contraception and preconception health for alcohol consumers. [https://www.cdc.gov/ncbddd/fasd/alcohol-use.html].   
In the spirit of prevention, identification, and treatment – Kudos to Drs. Tsang, Elliott, Horton and The Lancet.  Perhaps one day you all will be granted well-deserved knighthood!

Beyond Death Row

The problem of prenatal alcohol exposure is to the alcohol industry what second hand smoking was to the tobacco industry in the 1980s – masked by a society of consumers, deaf and numb to the long term, social, financial, and medical consequences.   The fact that this problem leads to an average life expectancy of 34 years old and can result in consequences as catastrophic as death row calls for social transformation.  Thank goodness there are billionaires now concerned about social and biological determinants of criminal behavior.  I’d like to talk to them personally for their efforts.

In our modern era of the Cosmic Internet, I believe it is possible for two people whose journeys are so different yet whose paths are so aligned to connect through a couple of degrees of separation. A year and a half ago, a new friend of mine, a corporate real estate executive, also named Susan [Boren], introduced me to a realtor who (10 minutes after receiving my email) found a 6.5 acre farm for me (2 miles from where I was living).  Within months, I bought the farm to grow my psychiatric practice and as home for my 501c3 nonprofit, http://www.7thGenerationFoundationInc.org.  Susan had just completed a deal with the Public Storage company, owned by B. Wayne Hughes, Jr., a California philanthropist, thought leader and change agent.  She suggested that we visit his therapeutic ranch after reading an article about his work with veterans who suffer from Post Traumatic Stress Disorder. In the interim, I opened Dream Catcher Farm – a therapeutic farm animal sanctuary in Potomac, MD and published a book, The Silent Epidemic: A Child Psychiatrist’s Journey Beyond Death Row [www.prenatalalcoholexposure.com].
A recent Forbes article reported that Mr. Hughes’ efforts are funding prison ministries and transforming the  pipeline to prison [http://www.sfchronicle.com/politics/article/Billionaire-s-transformation-from-real-estate-11077225.php].   As the first in my family to attend college and now a child psychiatrist, my book highlights this prison-pipeline connection in individuals with prenatal alcohol exposure and childhood trauma. My father, a 30 year police officer and veteran, Billy Wayne Rich, Sr., founded a prison ministry in New Bern, NC. Though our roots may be different, our missions are cosmically connected. Like Mr. Hughes, I believe that we have the capacity to transform the pipeline to prison – beginning when we are still in the quantum state…before entering the womb.
Recognizing the impossibility in this request to connect with such a profound reformer, I would like to donate a copy of my book to Wayne Hughes and trust that the Way will open for this to happen. In the words of Deepak Chopra, “You (We) are the Universe.” Nothing happens by chance. We are all connected by a force so profound as to create a tsunami by the flapping of butterfly wings on the other side of this beautiful planet. I have faith that Wayne Hughes will one day read, The Silent Epidemic then dance with me in the holograph to transform this complex problem.
I’ve decided to take Susan up on her idea of visiting SkyRose Ranch near Paso Robles.

Women Physician’s Voices Count in Prenatal Alcohol Exposure Awareness

The first female physician in the United States, Dr. Elizabeth Blackwell, would turn 196 today.  In her honor, a group of physicians established February 3 as National Women Physician’s Day.  Inspired by her maverick spirit (after all, how dare a woman in the mid-19th century think she could be a doctor?!) and participation in the recent Women’s March, I envision a paradigm shift when we female doctors are going to end the ignorance surrounding prenatal alcohol exposure.

As a pioneer in medicine who graduated medical school in 1849, Dr. Blackwell may well have been at the forefront of the Temperance Movement, which occurred in the late 1800’s to early 1900’s.  At that time, medical doctors understood the devastating effects of alcohol on reproductive outcomes, low birth weight, prematurity, child/family mental health, and infant/child morbidity and mortality.  Public health statistics abounded, fueling the fire for Prohibition in 1920.  What a pity we lost all that knowledge after its repeal in 1933.

At that time in history, mostly men called the shots in society because they were the main holders of wisdom in science.  Professional papers were written, published in high brow journals, read by a handful of intellectuals and scientists, then put on shelves to collect dust.  There was no Internet for information sharing.  If one did not make it to college, medical school, or professional school (i.e., law school, doctorate programs, etc.), then most scientific advancements and knowledge about medical matters were hidden within academic institutions.

Today, only those of us motivated, bright, and resourceful can endure the rigors of 4 years of college, another 4 years of medical school, and another 3-6 years of residency in our desired field.  In many ways, our knowledge is as hidden from plain site as ever.  One of the key areas of my interest has been in raising awareness about the leading known and preventable cause of neurodevelopmental disorders, birth defects, and developmental delays – which can occur as early as the third week after conception.  Since this time frame is often before a woman may know she is pregnant, our society can and must do more to encourage sexually active alcohol consumers to contracept  to avoid unintentional exposure of their offspring.

It is my hope to help childbearing age alcohol consumers understand that they should stop using alcohol if pregnant or planning a pregnancy and to use contraception until they have stopped using alcohol.  Their partners should support them in this effort – after all, it takes sperm 3 months to develop, and alcohol methylates the sperm DNA.  These methylation effects last for several generations, passing silently through the genome into unsuspecting offspring.

Theodore Geisel, also known as Dr. Seuss, once wrote – “Unless someone like you cares a whole awful lot, nothing’s going to get better, it’s not!”  Unless we speak up about what we know about prenatal alcohol exposure happening early in pregnancy so the lay public understands, people will not hear our message.  As a change agent and spirit sister of Dr. Elizabeth Blackwell, I am determined to get this message across.

Susan D. Rich, MD, MPH, DFAPA

Continue reading