Fetal Alcohol Spectrum Disorder (FASD), previously denoted FAS, fetal alcohol syndrome, did not debut in medical literature until 1973. At that time, it seemed impossible that alcohol could be a teratogen (a chemical that can disrupt fetal development), as how would it not have been noted earlier? People assumed it must rather have been the immoral or unhealthy lifestyle accompanying some alcohol-consuming mothers that caused FAS. But in 1977, experiments in animal models showed that alcohol alone was responsible for the effects of FAS. By this time, the evidence was strong enough that the FDA published an advisory warning against heavy drinking during pregnancy and recommended a somewhat refrained limit of 2 drinks per day. By 1989, alcohol was required to have a label warning against drinking while pregnant. FAS, therefore is not as well understood as we would wish solely based on the fact that it was just discovered around 50 years ago.
FAS was renamed FASD upon the discovery that there is an incredibly variable spectrum of disease manifestations. This was precipitated by the discovery that some patients suffered from physical, neurological, and behavioral deficits due to FAS, yet lacked the facial disfigurement. In classic FAS, the symptoms are numerous: dysmorphology (facial: thin upper lip with a smooth philtrum, small palpebra fissures and epicanthal folds of the eyes, an upturned nose with a flat nasal bridge, and “railroad track” ears; organ and limb abnormalities), growth deficiencies, both pre- and post- natal (microcephaly, small brain, especially with diminished basal ganglia and anterior vermis of the cerebellum; low birth rate and possible continued growth retardation), and central nervous dysfunction (nerve cells that have migrated to inappropriate areas, neuroglial heterotopias and abnormal development of the cerebellum and corpus callosum or abnormalities in cerebral blood flow, neurotransmitters, and neuronal activity in the absence of true neuroglial heterotopias). Though these symptoms are all present in extreme cases, leading to low IQ and severe disabilities, mainly “deficits in attention, learning and memory, emotional dysregulation, and executive functioning are core deficits, likely reflecting the dysfunction of the frontal lobe”, there is great variety in FAS manifestation, hence the current nomenclature of FASD.
The symptoms of FASD often lead to the comorbidities of psychiatric illness (i.e. ADHD, expressive language disorder) and predisposition to addiction. In addition, FASD impairs immune function and may contribute to susceptibility to other disorders that are not neurologically relevant, such as sudden infant death syndrome (SIDS) due to the brain structure itself. Despite the burden of such encumbering disabilities associated with FASD, the strife often worsens: As FASD victims grow up and begin to be treated as adults, yet lack the frontal lobe abilities to reason with adult forethought, they often end up in jail. Streisseguth et al found that 50% of FASD individuals will be confined in jail at some point in their life. They also identified incredibly heightened risk for lowered life span, disrupted school experiences, inappropriate sexual behaviors, and alcohol/drug use. It is absolutely insane that this devastating and debilitating disorder is 100% preventable (by abstaining from alcohol consumption during pregnancy: no safe amount has been established) and one of the most common causes of birth defects, with full spectrum FASD affecting 1% of births in the population and up to 3% of FASD cases on the spectrum. FASD, though, is often misdiagnosed or undiagnosed when facial dysmorphology is not apparent.
There is currently a search for clear genetic markers that can be identified later in life, such that diagnoses may be improved and it can be ensured that FASD sufferers receive adequate treatment through resources (behavioral (therapy/communal living/environmental enrichment/establishment of routine) and medical (cognitive supplements, choline to improve neuronal plasticity, )). Currently, there are identifiable markers, fatty acid ethyl esters, found in newborn meconium (their first waste excretion) yet they can only detect maternal alcohol consumption up to about a month prior, though there is some speculation that it can be found in hair and used to date alcohol consumption back further. It is necessary that markers that indicate timing and levels of alcohol exposure are discovered, such that a greater understanding of such factors effect on the disease outcomes can be obtained. Screening through questionnaires is the greatest source of information regarding fetal alcohol consumption currently, yet they are vulnerable to lack of memory and mainly deceit by mothers (fearing legal repercussions or judgement). The greatest hope for an impending breakthrough in FASD diagnosis is the use of epigenetics. Specific changes (i.e. of histones) have not been identified as of yet, but there is great promise, as research has identified such changes by showing that alcohol imposes teratogenic effects even when its exposure is prior to conception: it alters the genetic composition, epigenetically, of the gametes (up to 244 quantifiable gene changes when both parents had binge drank prior to conception) resulting in cognitive and emotional effects on the offspring.
Given the seriousness and life-long burden of FASD, one would think that there would be laws in place to prevent its occurrence i.e. that it would be illegal to drink while pregnant… this is mostly not the case. First of all, there are issues of the definition of the fetus as a person with rights. In a court case in the UK, where a mother was sued for damages inflicted upon her daughter, who suffered from severe and crippling FASD, yet the “court wouldn’t award damages to a child with fetal alcohol syndrome because, they said, the damage was done in utero… The unborn are not considered “persons” separate from their mothers in a legal sense; legal persons are accorded rights and protections by the state… It is well established that a fetus is not a ‘person’; rather it is a sui generis organism.” In the U.S. as well there are no federal laws that prohibit a mother from consuming alcohol while pregnant; purposely inflicting FASD upon your child is not a federal crime. It is left up to the state legislative level to impose restrictions on maternal alcohol consumption. This isn’t to say that they do, in fact New York has a law in place which requires bartenders to serve a drink to pregnant women requesting a drink, as a protection of human rights.
However, in 15 states substance abuse is classified as child abuse, in 3 states it is legal to confine a pregnant woman who consumes alcohol to a treatment facility (for mental health or substance abuse, and in 21 states it is either required or encouraged that physicians report suspected alcohol use during pregnancy to child protective services! Interestingly enough, though, the American Congress of Obstetricians and Gynecologists as well as NOFAS (an anti-FASD group) both strictly and strongly oppose any such laws that criminalize pregnant mothers who drink. This is due to the fact that there is some research showing that, “neither a state’s number of punitive laws nor its number of supportive laws are associated with a greater efficacy of its alcohol policies as measured by policy experts’ estimates,” as well as the idea that many such punitive measures cannot take effect until the baby is born and tested, thus they often lack any emphasis on preventative measures and often leave the child in state custody. In addition, research has shown that the threat of going to jail for illegal drug use deters pregnant mothers from seeking treatment, and supposedly this principle would apply equally to alcohol use during pregnancy, were it announced illegal.
To further complicate matters, some of the most devastating damage of alcohol consumption whilst pregnant take place in the very early weeks of development, before a mother may even realize she is pregnant. An interview of such mother by daily mail found that 2 such mothers indeed did not realize they were pregnant until 8 weeks into their pregnancy, at which point they completely stopped all alcohol consumption. They weren’t concerned at all about the health of their children, as they didn’t realize how far along they were when they found out they were pregnant until later. Upon diagnosis of their children with FASD (they were equally devastated and surprised. When people ask them about their children’s FASD they often pretend they had adopted the children, as the stigma of FASD mothers being low-life alcoholics is so prominent and few people realize that there are exceptional cases such as these mothers, where they never intentionally drank while pregnant. Due to this possibility, the CDC recommends that all women of reproductive age who are not on birth control abstain from alcohol.
A political issue with the legality of alcohol consumption while pregnant is that it is often not a stand-alone topic; A study has recently found that, “states with a greater number of punitive pregnancy and alcohol laws are more likely to have greater restrictions on women’s reproductive rights. This finding suggests that a primary goal of pursuing such policies appears to be restricting women’s reproductive rights rather than improving public health.” In addition, these states with the greatest number of punitive pregnancy and alcohol laws (i.e. restrictions on maternal drinking or abortions) were found to have fewer policies that support women’s health and had higher maternal mortality rates.
Chris Hackler explores the complicated issues surrounding FASD prevention in his paper, Ethical, Legal and Policy Issues in Management of Fetal Alcohol Spectrum Disorder. He explains that the main balancing act is protecting the fetus’s life and life quality while protecting the mother’s privacy and trust in the physician. He cites that while education about FASD is generally quite effective, in the case of addiction or mental instability it would be necessary that an outside party is involved to enforce alcohol deprivation, whether it be a spouse, relative, mental health facility, or law enforcement individual, yet it is unethical for a physician to divulge patient information according to the Hippocratic oath and the very basis of what medicine believes in. In addition to the ethics, it is not wise to break patient-physician trust on an individual or large-scale level because in this case the mother may not ever even seek basic medical treatment, for fear of “tattling”. What does complicate this matter, though, is the fact that there are indeed exceptions to patients’ confidentiality, where the physician is actually required to report incidences, such as those of gunshot wounds or communicable diseases, where the main feature is that not reporting such cases could directly endanger (through bodily harm) an identifiable individual. The ambiguity here, then, is that it is currently legally ambiguous whether a fetus is an individual.
South Carolina, however, has taken legal measures to define a fetus as a person and therefore prosecutes pregnant women (on the basis of child endangerment) ‘risk harm to viable fetuses”, even attempting legalization of randomized cocaine testing in pregnant mothers for such penalization, though this was deemed unconstitutional by the supreme court. In Wisconsin, as well, mothers found of consuming alcohol during pregnancy can be “found guilty of ‘unborn child abuse’ and committed to involuntarily inpatient care; About a third of the states require that medical and other professionals report positive drug tests in pregnant women and newborns to an appropriate state agency.” However, in addition to the American Congress of Obstetricians and Gynecologists, the American Academy of Pediatrics, the American Medical Association, the American Nurses Association, and the American Public Health Association all recommend against punitive measures in reaction to drinking alcohol during pregnancy, as they believe, “treats medical problems such as addiction and psychiatric illness as if they were moral failings, criminalizes otherwise legal maternal behavior, and unjustly affects the most vulnerable women. The ultimate effect of punitive policies may be to discourage prenatal care and undermine the physician-patient relationship.”
Based on the overall difficulties in dealing with FASD prevention, it seems that since it is imperative that it be prevented, yet punitive measures are greatly recommended against, there must be great, positive efforts to prevent maternal alcohol consumption, such as providing free counseling, supportive agencies, etc. Even so, I don’t foresee an end, as mothers will still be ashamed to admit maternal drinking once punitive measures are removed in places they are currently implicated due to the social stigma around drinking while pregnant. It seems the most effective measure we are able to currently take is to improve access to free birth control, such as to prevent accidental pregnancies, and make this service extremely visible—make a campaign of it. There certainly needs to be philosophical, scientific, and political collaboration to approach an issue as complicated as FASD.