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Frequently Asked Questions

Fetal Alcohol Syndrome

What are FASDs?

Fetal alcohol spectrum disorders (FASDs) is an umbrella term that encompasses several diagnostic categories related to the adverse effects resulting from in utero exposure to alcohol. The term itself is not a clinical diagnosis. Diagnoses under the FASD umbrella include fetal alcohol syndrome (FAS), partial fetal alcohol syndrome (pFAS), alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD).
 
In general, diagnoses under the FASD umbrella involve a range of clinical manifestations, including physical, behavioral, and/or learning problems. Children with any of the FASDs need to be identified, diagnosed, monitored, and referred for appropriate care and services or further evaluations as indicated. Effects related to each of the FASD diagnoses are lifelong and affect not only the child, but also his or her family and the wider community.
 

How common are FASDs?

The exact number of children who have an FASD is difficult to determine. However, based on studies the Centers for Disease Control and Prevention and others, it is estimated that in the United States, somewhere between 800 and 8,000 babies could be born each year with full FAS. These rates are comparable to spina bifida and Down syndrome. 
 
Further, researchers believe that there are at least 3 times as many cases of FASDs beyond those with full FAS. Some experts estimate that approximately 40,000 babies may be born with an FASD in the United States each year. Much more work is needed in the area of diagnosis and estimating prevalence of FASDs to have more accurate numbers. 
 
In addition, specific groups are known to have heavy alcohol use have a documented higher FAS rate, such as children in foster care, Native American/Alaska Native children, and children of foster/adoptive. Children with FASDs have been identified in all cultural groups that use alcohol.
 
 

IDENTIFICATION AND DIAGNOSTIC ISSUES

 
A history of in utero exposure to alcohol is very important in making any FASD diagnosis, although when this information is not available but all 3 other criteria are present, a diagnosis of FAS should still be made.
 

What are the physical and developmental criteria for each of the FASD diagnoses?

  • Fetal alcohol syndrome (FAS): FAS represents the most involved end of the FASD spectrum. In other words, FAS describes those people with the greatest alcohol effects, causing signs and symptoms so distinct that the diagnosis is based on special measurements and findings in each of the 3 following areas:
  1. Three specific facial abnormalities:
    • smooth philtrum (the area between nose and upper lip)
    • thin upper lip
    • small palpebral fissures (the horizontal eye openings)
  2. Growth deficit (lower-than-average height, weight, or both)
  3. Central nervous system (CNS) abnormalities (structural, neurologic, functional, or a combination of these)
Dysmorphic Features of FAS

View larger image of facial abnormalities

A history of in utero exposure to alcohol is very important in making any FASD diagnosis, although when this information is not available but all 3 other criteria are present, a diagnosis of FAS should still be made.
  • Partial fetal alcohol syndrome (pFAS): When a person does not meet the full diagnostic criteria for FAS but has a history of prenatal alcohol exposure, some of the facial abnormalities as well as a growth problem or CNS abnormalities, that person is considered to have partial FAS (pFAS). 
  • Alcohol-related neurodevelopmental disorder (ARND): People with ARND do not have abnormal facial features or growth problems, but they do have problems with how their brain and nervous system were formed as well as how they function. These individuals may have intellectual disabilities, behavior or learning problems, or nerve or brain abnormalities. In particular, a 2011 federally convened committee that reviewed the science noted that these children are most likely to have problems with neurocognitive development, adaptive functioning, and behavior regulation.  
  • Alcohol-related birth defects (ARBD): People with ARBD have problems with how some of their organs were formed and/or how they function, including the heart, kidney, bones (possibly the spine), as well as hearing and/or vision. These individual also may have one of the other FASDs. 

What are some of the neurodevelopmental and functional deficits associated with FASDs?

FASDs have often been described as “hidden” or “invisible” disabilities because basic language skills can be preserved (eg, vocabulary and syntax normal while higher order pragmatic or social aspects are impaired) and the classic FAS dysmorphia are subtle or even lacking. Deficits have been reported in the following areas:
  • Global deficits or delays. It is important to note that even if a child has global intellectual or developmental deficits, he or she may still score in the normal development range, but lower than what would be expected for his or her environment and background. Only about one-quarter of those with complete FAS are classified as having an intellectual disability or impaired for a particular skill.
  • Attention problems are often noted for children with FASDs resulting in a diagnosis of attention deficit/hyperactivity disorder (ADHD). However, the pattern of attention problems of children with FASDs differs from the classic pattern of ADHD. Individuals with FASDs tend to have difficulty with the encoding of information and flexibility (shifting) aspects of attention; whereas children with ADHD typically display problems with focus and sustaining attention. 
  • Executive functioning (EF) is the ability to maintain appropriate problem-solving for attainment of a future goal, and includes the more specific skills of inhibition, planning, and mental representation. Clear deficits in EF have been shown for individuals with FASDs. Impaired rule shifting, working memory, and planning and slower information processing consistently are observed for this population of children.
  • Motor and visual-spatial functioning delays or deficits can be found in FAS, even in very young infants and toddlers with FASDs. Visual-motor/visual-spatial coordination is a particularly vulnerable area of functioning, which might cascade into difficulty with math concepts and skills later in development. Deficits in balance and coordination have been observed, as has delayed motor milestone acquisition.
  • Social skills problems and immaturity arising from the EF, attention, and other developmental problems often cause significant difficulty when people with FASDs interact with others. Mental representation problems can lead to social perception or social communication problems that make it difficult to grasp more subtle human interactions. Both parents and teachers indicate that children with FASDs have poor social skills, including fewer friendships, immature interaction skills, and lack of social awareness.
  • Other impairment areas demonstrated by standardized testing include sensory problems (eg, tactile defensiveness and oral sensitivity), pragmatic language problems (eg, difficulty reading facial expression, poor ability to understand the perspectives of others), memory deficits (eg, forgetting well-learned material and needing many trials to remember), and impaired response to common parenting practices (eg, not understanding cause-and-effect discipline).

How can I differentiate a child with an FASD from a child with ADHD not due to in utero exposure to alcohol?

Attention problems are often noted for children with FASDs, with many receiving a diagnosis of ADHD. Research has shown consistently that the attention problems of children with FAS differ from the classic pattern of ADHD. While children with ADHD of any etiology display problems with focus and attention, those with FASD tend to have additional difficulty with encoding information and shifting attention or "flexibility". Research participants with FAS performed worse on measures of visual attention than measures of auditory attention. Individuals with an FASD also can appear hyperactive because their impulsivity might manifest as increased activity levels. Finally, data indicate that children with FASDs who have attention problems may not respond to stimulant medications, which often serves as an initial clue that an FASD should be considered.
 

What are some comorbidities of FASDs?

Medical issues associated with FASDs include poor immune functioning resulting in frequent respiratory or other infections (eg, otitis media, sepsis), increased risk of seizures, and early-onset diabetes. Exposure to neglect, abuse, domestic violence, or extremely chaotic living situations can trigger complex emotional trauma, with frequent mental health and functional impairment. Commonly reported co-occurring mental health issues include conduct disorders, oppositional defiant disorders, anxiety disorders, adjustment disorders, sleep disorders, and depression. Adolescents or young adults with an FASD and who never received services or were older when diagnosed can be at very high risk for psychosocial issues, such as dependent living conditions, disrupted school experiences, poor employment records, substance use, and encounters with law enforcement.
 
 

PEDIATRIC PRACTICE ISSUES

 

What type of risk factors should raise thoughts about possible FASDs?

Recognition of FASD-suggestive features and associated problems is exactly what should occur during well-child visits to the medical home. Physical features such as facial abnormalities, growth retardation, or frequent infections may trigger an FASD evaluation. Whenever developmental problems or prenatal alcohol exposure are documented, FASDs should be a consideration. Finally, certain sociodemographic factors should trigger an assessment for an FASD, such as foster care, international adoption, or known risk groups (eg, living on a reservation or in other socially isolated locations).
 

Diagnosing FASDs seems like more than should be handled by a general pediatrician. What should I do?

Some medical home providers feel comfortable identifying children as possibly having an FASD and then conducting the comprehensive assessments necessary to complete the diagnosis. Others feel less confident about making the diagnosis themselves and prefer to refer the child to one or more specialists with this expertise or to a clinic specializing in multidisciplinary evaluations. See the FASD algorithm for referral considerations. A list of local diagnostic resources is also available through the National Organization on Fetal Alcohol Syndrome (NoFAS).
 

Should long-term treatment and care be managed through a medical home?

Pediatricians and other medical home providers are ideal practitioners to monitor the health status and developmental progress of children with FASDs. Medical home care generally encompasses coordinating subspecialist visits, referrals, health maintenance, and continuity of care.
 

What medication issues should be considered for a child who has an FASD?

At present, there are no medications specifically indicated or approved for the treatment of FASDs. Several classes of medications are commonly prescribed to help manage FASD symptoms, behaviors, or other concerns. Because children often see many professionals before receiving an FASD diagnosis, they might come to the medical home with multiple medications prescribed by multiple providers, and communication among these professionals may not be optimal. Access additional information regarding Medication and Emerging Therapies.
 

Are there treatments for FASDs?

Yes, but no single treatment is right for every child. Good treatment plans include close monitoring, follow-up care, and responsiveness to needs. Families and providers are encouraged to seek evidence-based interventions for children with an FASD. Additional information is available through the Centers for Disease Control and Prevention.
Research has shown that effective interventions for children with FASDs share some basic elements. Parent education and training offers a helpful foundation by assisting parents to increase their knowledge about FASDs and how the associated brain damage altered their child’s way of learning and interacting with the world. The concept that children with FASDs “can’t” rather than “won’t” is particularly important, since children with FASDs tend to have good basic language skills and superficial social skills that often mask the extent of true disabilities. Training parents how to advocate for their child in the medical and educational systems is key. Also important is individualized intervention with the child through explicit instruction and the incorporation of skills into their daily life. Those approaches used with typically developing children and that employ observation and abstraction from rules, skills, and life learning have been less effective.
 

Where can information about locally available interventions and programs for children with FASDs be found?

The NOFAS Web site offers a state-by-state directory to locate diagnostic specialists, support groups, and other resources in most areas. Some general service areas that have been identified as helpful to those with FASDs and their families include child-specific interventions targeting the individual profile of strengths and weaknesses, family support, and medication support. Service access often begins through the child’s special education program, state developmental disabilities services, and those providing allied health therapies.
 

How do I bill for FASD-related services?

The International Classification of Diseases, Ninth Revision code 760.7 refers to any noxious influences affecting the fetus. Code 760.71 refers specifically to prenatal exposure to alcohol, but is not a specific code for any FASD. However, it is commonly used for children with the full diagnosis of FAS. In addition, all other medical or behavioral health diagnosis codes should be used when applicable. Some frequently used classes of codes include 315.xx (specific delays in development), 319.xx (unspecified mental retardation), 312.xx (disturbance of conduct, NOS), 310.xx (nonpsychotic mental disorder due to organic brain damage), and 309.xx (adjustment reaction).  Access practice management and coding guidance.
 

What if a foster/adoptive child with an FASD enters my practice?

A greater number of children in foster care and adoption systems, particularly international adoptions, are known to have FASDs. It is important to acknowledge the feelings associated with learning of the diagnosis. However, it is also important to shift focus from blaming the biological mother to working as the child’s medical home provider to determine his or her best course of treatment. 
 
Children in foster or adoptive care can be particularly challenging for medical home providers when trying to determine if an FASD diagnosis is applicable. Very often, complete historical information, including the prenatal history, is not available. Any early psychosocial trauma from poor caregiving, removal from the home, and the placements experienced can significantly complicate the clinical picture.
 
Prospective adoptive or foster parents should be made aware that children in these systems have greater prenatal exposure risks. All information possible should be obtained from the adoption or foster care coordinators regarding the biological mother’s prenatal care and lifestyle and any potential or known alcohol, drug, and other environmental risk exposures. If desired, clinicians specializing in the diagnosis of FASDs will usually offer to examine pictures and review the pre-placement history of the potential adoptee/foster care child, including considerations for international adoptions.
 

What is the best way to handle talking with the biological mother of a child with an FASD?

It is important to build a rapport with the mother and allow her to express her emotions and concerns related to her child’s health and the demands of parenting a child with an FASD. Reaffirm the parent as a key part of the child’s care team. Keep all lines of communication and advocacy open as the child’s care is coordinated through the medical home.
 
If the prenatal exposure to alcohol occurred in the context of social drinking or binge drinking prior to knowledge about being pregnant, it is important to address the mother’s emotions and concerns, and support her decision to quit alcohol use when she did. Alcohol use abstinence offered protection to her baby whenever it occurred.
 
For mothers with alcohol abuse or addiction problems, acknowledgment of the issue and referral to appropriate treatment are usually most appropriate. Local Alcoholics Anonymous (AA) groups, particularly a women’s group, or a local alcohol counselor or treatment center may be helpful. AA is a cost-free community service of men and women who share their experience, strength, and hope with each other that they may solve their common problem and help others to recover from alcoholism. Locate an AA program near you.
 
The Substance Abuse and Mental Health Services Administration (SAMHSA) has a treatment facility locator. This locator helps people find drug and alcohol use treatment programs in their area.
 
The National Organization on Fetal Alcohol Syndrome has a Circle of Hope Birth Mother’s Network that can be contacted in person or online. View additional tips on addressing families.  
 

What is the role of the pediatrician or other medical home provider in the primary prevention of alcohol-exposed pregnancies?

The pediatrician can play an important role in the primary prevention of alcohol-exposed pregnancies by taking the opportunity to do the following:
  • An adolescent patient: As an important part of care in the medical home, the pediatrician or other provider’s role includes offering anticipatory guidance and helping adolescents develop skills to make responsible decisions and healthy choices, including informing adolescents about sexual and substance use abstinence and the dangers of alcohol use and pregnancy. 
  • A subsequent pregnancy or adoption by a mother with a  child with FASDs: Whenever a biological, foster, or adoptive child receives an FASD diagnosis, an opportunity arises for discussing FASD prevention for any future pregnancies

How are FASDs prevented?

FASDs are 100% preventable. The only sure way to prevent FASDs is to completely avoid alcohol use while pregnant. Women who are trying to get pregnant or who could get pregnant also should avoid alcohol. This is because damage from prenatal alcohol exposure can occur even during the earliest weeks of pregnancy, even before a woman realizes she’s pregnant.
 

What is considered “a drink”?

In the United States, a “standard drink” is defined as any alcoholic beverage that contains 0.6 fluid ounces (14 g) of pure alcohol. In general, 12 oz of beer, 5 oz of wine, and a 1.5-oz shot of liquor are each one standard drink. Mixed drinks or alcohol served in restaurants/bars often contain more than one standard drink. 
 

Is there a safe amount of alcohol consumption during pregnancy?

There is no safe amount of alcohol when a woman is pregnant. Research evidence is that even drinking small amounts of alcohol while pregnant can lead to miscarriage, stillbirth, prematurity, or sudden infant death syndrome. 
 

Does more drinking cause more harm?

Pregnant women who drink alcohol often or in higher amounts increase the risk for their babies to have alcohol-related damage and for the damage to be more severe. However, even low to moderate amounts of alcohol can have adverse effects. Thus the best advice is to abstain from drinking alcohol while pregnant. 
 

Is there any type of alcohol that is safe to drink during pregnancy?

There is no safe type of alcoholic beverage. Red wine is no safer than white wine, beer, or mixed drinks, since all contain alcohol.
 

Is there a safe time during pregnancy when a woman can drink alcohol?

There is no point during pregnancy when drinking alcohol is considered safe. Adverse effects can happen at the earliest stages of pregnancy, even before a woman realizes she’s pregnant. Because different aspects of the child are developing at all stages of pregnancy, alcohol’s effects on a developing baby can result from alcohol use at any point during pregnancy. Alcohol is a known neurotoxin, so since the brain develops throughout pregnancy, the developing brain and nervous system are always at risk.
 

What if a patient asks about low-level alcohol consumption during pregnancy? Is there really solid evidence that low levels of consumption are dangerous?

Many studies show that drinking alcohol at low to moderate levels during pregnancy is associated with miscarriage, stillbirth, prematurity, and a range of reproductive difficulties. Alcohol can affect each pregnancy differently for a variety of reasons, such as genetics, metabolism, and nutrition.
 
Prenatal alcohol exposure has consistently been shown to result in the lifelong FASDs. It is also well documented that FASDs do not occur if alcohol is not consumed during pregnancy. There is no evidence showing that a “small amount” of alcohol will not cause an FASD. Because no safe level of alcohol use has been established and alcohol has the potential to cause both adverse pregnancy outcomes and FASDs, the best advice remains for women to abstain from alcohol when pregnant or trying to become pregnant.  
 

Is alcohol harmful while breastfeeding?

Alcohol passes through breast milk to a baby, so it’s best for women to avoid habitual use of alcohol while breastfeeding. Many women have heard that drinking beer increases milk supply. This is an untrue urban myth, and women should be advised as such. Studies suggest that consuming alcohol of any kind may decrease the amount of milk the baby drinks. Further, alcohol can change the taste of breast milk, making breastfeeding objectionable to some babies and decreasing the known positive effect associated with breastfeeding.
 
If a woman chooses to have an alcoholic drink, it’s best to do so just after she has nursed or expressed milk rather than before, and allow at least 2 hours per drink before the next breastfeeding or pumping session. That way, the body has as much time as possible to rid itself of the alcohol before the next feeding. There are concerns about long-term, repeated exposures of infants to alcohol via mother’s milk, so moderation is definitely advised. Chronic consumption of alcohol may also reduce milk production.
 

What are the genetic factors related to FASDs?

There is no evidence that FASDs are hereditary. A woman with an FASD does not have greater risk of having a child with an FASD unless she consumes alcohol during her pregnancy.
 
There are no known genetic factors predictive of which particular child exposed to alcohol in utero will have an FASD or how significantly one is affected, although research in this area is underway. Epigenetic factors also are another area of basic science research currently being conducted. As information becomes available, the AAP will update its members.
 

Where can I get more information about FASDs?

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