Using the same techniques to ascertain maternal drinking during pregnancy in Cape Town, the Jacobsons and their collaborator Dr. Christopher Molteno, a developmental pediatrician with the University of Cape Town, conducted the first prospective longitudinal study of fetal alcohol syndrome in which women were recruited during pregnancy and found a very similar neurobehavioral profile in a longitudinal cohort of children, half of whom were exposed at very heavy levels.
Given the unusually high levels of prenatal alcohol exposure in Cape Town and the consistency of the neurobehavioral profile with that seen in the U. They have been using a number of neuroimaging techniques including MRI, which measures the brain's structure, functional MRI fMRI , which documents brain activity while completing a task, and diffusion tensor imaging DTI , which assesses brain white matter integrity.
The Jacobsons initiated a collaboration with Dr. The collaborators went on to produce 19 papers from that initial Fogarty grant. Meintjes says this Fogarty fMRI grant "kick started" advanced neuroimaging research in South Africa, as well as Meintjes's neuroscience career. Based on her training and on the first studies generated by this grant, Meintjes was awarded a prestigious research chair and Siemens contributed to the purchase of a scanner that helped launch an imaging research center that Meintjes currently directs.
With her position, came funding for students and post-docs that enabled her to expand her research group. The diagnosis of FASD can be difficult because not all alcohol-exposed children have the distinctive facial abnormalities and other physical traits associated with the condition and the neurobehavioral deficits are often similar to those seen in other conditions, such as attention deficit hyperactivity disorder.
Data from neuroimaging studies conducted by Jacobson and colleagues suggest that this deficit may be attributable, in part, to slower processing of information due to deficits in the brain's white matter, which is responsible for transmitting signals across brain regions during a task. Children with FASD and ADHD both have problems with math, but as had been shown in the Detroit cohort, the type of problems in number processing was distinct for the two disorders.
Alcohol-affected children and normal controls were each given a simple addition problem to solve while in the scanner. Both groups were able to perform the task, but there was a telling difference - children with FASD had to use more extensive brain regions to do so. Moreover, a greater amount of alcohol reported by the mother during pregnancy predicted lower levels of activation in the principal brain region known to mediate number processing in typically developing children.
Children with FASD can have a range of physical, cognitive and behavioral problems that include poor memory, diminished communication and reasoning skills, and difficulty in school, especially with math.
May's team has shown specialized classroom instruction can significantly improve language and literacy outcomes. For example, some children with FASD have learned to identify first and last sounds of words, become aware of and produced rhymes, blended syllables, and used word picture cards to build sentences. Other researchers have had success using visual imagery to teach math concepts. The researchers are also investigating other approaches.
On the contrary, clinical and animal studies have identified a broad spectrum of pathways through which maternal alcohol can negatively affect the outcome of a pregnancy. Clear conclusions with universal validity are difficult to draw, since different ethnic groups show considerable genetic polymorphism for the hepatic enzymes responsible for ethanol detoxification.
Genetic examinations have revealed a continuum of long-lasting molecular effects that are not only timing specific but are also dosage specific; with even moderate amounts being able to cause alterations. A human fetus appears to be at triple risk from maternal alcohol consumption: Because admission of alcohol use during pregnancy can stigmatize birth mothers, many are reluctant to admit drinking or to provide an accurate report of the quantity they drank.
This complicates diagnosis and treatment  of the syndrome. As a result, diagnosis of the severity of FASD relies on protocols of observation of the child's physiology and behavior rather than maternal self-reporting.
A positive finding on all four features is required for a diagnosis of FAS. However, prenatal alcohol exposure and central nervous system damage are the critical elements of the spectrum of FASD, and a positive finding in these two features is sufficient for an FASD diagnosis that is not "full-blown FAS". While the four diagnostic systems essentially agree on criteria for fetal alcohol syndrome FAS , there are still differences when full criteria for FAS are not met.
This has resulted in differing and evolving nomenclature for other conditions across the spectrum of FASD, which may account for such a wide variety of terminology. Most individuals with deficits resulting from prenatal alcohol exposure do not express all features of FAS and fall into other FASD conditions. However, these other FASD conditions may create disabilities similar to FAS if the key area of central nervous system damage shows clinical deficits in two or more of ten domains of brain functioning.
In these other FASD conditions, an individual may be at greater risk for adverse outcomes because brain damage is present without associated visual cues of poor growth or the "FAS face" that might ordinarily trigger an FASD evaluation. Such individuals may be misdiagnosed with primary mental health disorders such as ADHD or oppositional defiance disorder without appreciation that brain damage is the underlying cause of these disorders, which requires a different treatment paradigm than typical mental health disorders.
The following criteria must be fully met for an FAS diagnosis: To make this diagnosis or determine any FASD condition, a multi-disciplinary evaluation is necessary to assess each of the four key features for assessment. Generally, a trained physician will determine growth deficiency and FAS facial features. These professionals work together as a team to assess and interpret data of each key feature for assessment and develop an integrative, multi-disciplinary report to diagnose FAS or other FASD conditions in an individual.
People with pFAS have a confirmed history of prenatal alcohol exposure, but may lack growth deficiency or the complete facial stigmata. Central nervous system damage is present at the same level as FAS. These individuals have the same functional disabilities but "look" less like FAS.
The following criteria must be fully met for a diagnosis of Partial FAS: Fetal alcohol effects FAE is a previous term for alcohol-related neurodevelopmental disorder and alcohol-related birth defects. Alcohol-related neurodevelopmental disorder ARND was initially suggested by the Institute of Medicine to replace the term FAE and focus on central nervous system damage, rather than growth deficiency or FAS facial features. The Canadian guidelines also use this diagnosis and the same criteria.
While the "4-Digit Diagnostic Code" includes these criteria for three of its diagnostic categories, it refers to this condition as static encephalopathy.
The behavioral effects of ARND are not necessarily unique to alcohol however, so use of the term must be within the context of confirmed prenatal alcohol exposure. The following criteria must be fully met for a diagnosis of ARND or static encephalopathy: Prenatal alcohol exposure is determined by interview of the biological mother or other family members knowledgeable of the mother's alcohol use during the pregnancy if available , prenatal health records if available , and review of available birth records, court records if applicable , chemical dependency treatment records if applicable , or other reliable sources.
Exposure level is assessed as confirmed exposure , unknown exposure , and confirmed absence of exposure by the IOM, CDC and Canadian diagnostic systems. Amount, frequency, and timing of prenatal alcohol use can dramatically impact the other three key features of FASD. While consensus exists that alcohol is a teratogen, there is no clear consensus as to what level of exposure is toxic. The IOM and Canadian guidelines explore this further, acknowledging the importance of significant alcohol exposure from regular or heavy episodic alcohol consumption in determining, but offer no standard for diagnosis.
Canadian guidelines discuss this lack of clarity and parenthetically point out that "heavy alcohol use" is defined by the National Institute on Alcohol Abuse and Alcoholism as five or more drinks per episode on five or more days during a day period. For many adopted or adults and children in foster care, records or other reliable sources may not be available for review.
Reporting alcohol use during pregnancy can also be stigmatizing to birth mothers, especially if alcohol use is ongoing. Confirmed absence of exposure would apply to planned pregnancies in which no alcohol was used or pregnancies of women who do not use alcohol or report no use during the pregnancy.
This designation is relatively rare, as most people presenting for an FASD evaluation are at least suspected to have had a prenatal alcohol exposure due to presence of other key features of FASD. The standardized approach is referred to as the Ten Brain Domains and encompasses aspects of all four diagnostic systems' recommendations for assessing CNS damage due to prenatal alcohol exposure. The framework provides clear definitions of brain dysfunction, specifies empirical data needed for accurate diagnosis, and defines intervention considerations that address the complex nature of FASD with the intention to avoid common secondary disabilities.
The proposed Ten Brain Domains include: However, the Ten Brain Domains are easily incorporated into any of the four diagnostic systems' CNS damage criteria, as the framework only proposes the domains, rather than the cut-off criteria for FASD.
The CDC reviewed nine syndromes that have overlapping features with FAS; however, none of these syndromes include all three FAS facial features, and none are the result of prenatal alcohol exposure: The only certain way to prevent FAS is to avoid drinking alcohol during pregnancy. There is some controversy surrounding the "zero-tolerance" approach taken by many countries when it comes to alcohol consumption during pregnancy. The assertion that moderate drinking causes FAS is said to lack strong evidence and, in fact, the practice of equating a responsible level of drinking with potential harm to the fetus may have negative social, legal, and health impacts.
There is no cure for FASD, but treatment is possible. Because CNS damage, symptoms, secondary disabilities, and needs vary widely by individual, there is no one treatment type that works for everyone. Behavioral interventions are based on the learning theory , which is the basis for many parenting and professional strategies and interventions. Frequently, a person's poor academic achievement results in special education services, which also utilizes principles of learning theory , behavior modification , and outcome-based education.
Many books and handouts on FAS recommend a developmental approach, based on developmental psychology , even though most do not specify it as such and provide little theoretical background. Optimal human development generally occurs in identifiable stages e. FAS interferes with normal development,  which may cause stages to be delayed, skipped, or immaturely developed. Over time, an unaffected child can negotiate the increasing demands of life by progressing through stages of development normally, but not so for a child with FAS.
By knowing what developmental stages and tasks children follow, treatment and interventions for FAS can be tailored to helping a person meet developmental tasks and demands successfully. This approach is an advance over behavioral interventions, because it takes the person's developmental context into account while developing interventions.
The advocacy model takes the point of view that someone is needed to actively mediate between the environment and the person with FAS. An advocate for FAS: The advocacy model is often recommended, for example, when developing an Individualized Education Program IEP for the person's progress at school.
An understanding of the developmental framework would presumably inform and enhance the advocacy model, but advocacy also implies interventions at a systems level as well, such as educating schools, social workers, and so forth on best practices for FAS. However, several organizations devoted to FAS also use the advocacy model at a community practice level as well.
Several organizations and state agencies in the U. The US Centers for Disease Control estimates 3 million women in the United States are at risk of having a baby with FASD, and recommended that women of child bearing age should be on birth control or abstain from drinking alcohol as the safest way to avoid this. The primary disabilities of FAS are the functional difficulties with which the child is born as a result of CNS damage due to prenatal alcohol exposure.
The exact mechanisms for functional problems of primary disabilities are not always fully understood, but animal studies have begun to shed light on some correlates between functional problems and brain structures damaged by prenatal alcohol exposure. Functional difficulties may result from CNS damage in more than one domain, but common functional difficulties by domain include: These disabilities often emerge over time due to a mismatch between the primary disabilities and environmental expectations; secondary disabilities can be ameliorated with early interventions and appropriate supportive services.
Two additional secondary disabilities exist for adults: Eight factors were identified in the same study as universal protective factors that reduced the incidence rate of the secondary disabilities: Malbin has identified the following areas of interests and talents as strengths that often stand out for those with FASD and should be utilized, like any strength, in treatment planning: From the s to the s, alcohol was commonly used as a tocolytic , a method to stop preterm labor.
The method originated with Dr. Fritz Fuchs, the chairman of the department of obstetrics and gynecology at Cornell University Medical College. In later stages of pregnancy, the alcohol was administered intravenously and often in large amounts. Such heavy intoxication is highly likely to contribute to FASD. Anecdotal accounts of prohibitions against maternal alcohol use from Biblical , ancient Greek , and ancient Roman sources  imply a historical awareness of links between maternal alcohol use and negative child outcomes.
In Gaelic Scotland, the mother and nurse were not allowed to consume ale during pregnancy and breastfeeding Martin Martin. Claims that alcohol consumption caused idiocy were part of the Teetotalism's message in the 19th century,  but such claims, despite some attempts to offer evidence, were ignored because no mechanism could be advanced.
The earliest recorded observation of possible links between maternal alcohol use and fetal damage was made in by Dr. William Sullivan, a Liverpool prison physician who noted higher rates of stillbirth for alcoholic female prisoners than their sober female relatives; he suggested the causal agent to be alcohol use.
Goddard of the Kallikak family —popular in the early s—represents this earlier perspective,  though later researchers have suggested that the Kallikaks almost certainly had FAS.
Prior to fetal alcohol syndrome being specifically identified and named in , only a few studies had noted differences between the children of mothers who used alcohol during pregnancy or breast-feeding and those who did not, and identified alcohol use as a possible contributing factor rather than heredity.
Fetal Alcohol Syndrome was named in by two dysmorphologists , Drs. What information do I need to provide?
When you sign up, you will need to tell us your name and provide your email address. We will use this email address to connect you with the FAS researchers in your state. How do I start? Signing up is a simple 3-step process: Provide your name and your real email address so we can contact you. Answer some questions that will help connect you with the researchers in your state: Additional info such as some family history.
After you sign up, you will receive an email acknowledging that you have registered. Depending on when you register, you may not be contacted immediately.
When you are contacted about a specific study, you can tell the researcher that you do not want to take part in their study. You are free to join the study or not. You can also ask to have your name deleted from the registry at any time by sending a request to cifasdic iu.
Edward Riley, at from 8: We will compare your answers to the needs of the research study in your state.
Fetal Alcohol Syndrome Prevention Research Janet R. Hankin, Ph.D. Alcohol consumption during pregnancy can have numerous adverse health consequences for the developing fetus, including fetal alcohol syndrome (FAS) and alcohol-related effects, and therefore is a significant public health problem.
Feb 09, · Amanda Dreasher, a public health nurse, measures a boy's eyes in , in Emporia, Kan., at the Fetal Alcohol Syndrome Clinic. (David Doemland/AP) Fetal alcohol syndrome, which can be physically, emotionally and intellectually disabling, is quite common, and most sufferers are not being diagnosed, according to new research.
Alcohol can disrupt fetal development at any stage during a pregnancy — including at the earliest stages and before a woman knows she is pregnant. Research shows that binge drinking, which means consuming four or more drinks per occasion, and regular heavy drinking put a fetus at the greatest risk. National Organization on Fetal Alcohol Syndrome / Volunteer for CIFASD Research Prenatal alcohol exposure can harm a baby’s body or brain, and can cause challenges that can last a lifetime. However, not enough is known about Fetal Alcohol Spectrum Disorders (FASD).
Fetal Alcohol Spectrum Syndrome Research (FASDs), Prenatal Substance Exposure, and Prevention Research Fetal Alcohol Spectrum Disorders (FASDs), Prenatal Substance Exposure, and Prevention Research Preventing FAS/ARND in Russian Children (NIH, National Institute on Alcohol and Alcoholism (NIAAA) and Fogarty International Center). Fetal alcohol spectrum disorder is an umbrella phrase that includes the more well known ‘fetal alcohol syndrome,’ which can be fatal. FASD also can cause severe complications with learning ability and behavior, stunted development, and facial abnormalities.