Time for the development of effective approaches for the prevention of fetal alcohol spectrum disorder?

Fetal alcohol syndrome (FAS) is defined as brain dysfunction, a characteristic set of minor facial features and growth deficiency in the context of alcohol exposure in gestation. It is thought to occur in one-to-three per 1000 births in the USA and Europe. As with most environmental agents that produce birth defects, alcohol produces a wider range of abnormalities than one specific syndrome, such as FAS alone. This larger group, which includes FAS, is called the fetal alcohol spectrum disorder (FASD) and this might occur as frequently as in one per 100 births [1–4]. This is therefore a serious public health problem of epidemic proportion.

The brain is the principal target for FASD teratogenesis

The brain disorder in FASD is by far the most common and serious part of the condition. Animal experimentation shows that alcohol most commonly produces neurochemical, microanatomic changes throughout the brain rather than gross malformations [5]. These changes frequently go undetected for many years, until the affected child reaches an age when normal functions should be maturing but are recognizably impaired. The changes manifest in a wide variety of mild-to-moderate brain dysfunctions in processes, including memory, executive function, social communication and attention, as well as irregular patterns in intelligence test subskills and motor and sensory differences [6–8]. Childhood depression, anxiety and other mental health conditions are also common and might be other manifestations of the primary brain alterations or may be secondary. The combination of these functional deficits leads to severe adaptive problems at home, at school or work, and in society. Most frequently, individuals who present with maladaptation from this form of diffuse brain dysfunction are either blamed for their failure to take responsibility for their actions or they are treated for some of their specific functional deficits, such as learning disability, attention deficit or depression. If and when this partial treatment is ineffective, the family is usually left to cope without further support. In our experience, FASD is not only devastating to the affected individual whose life choices become narrowed but also for his/her family who are exhausted and feel like failures.

The situation is made more difficult because this form of brain dysfunction is not easily detected. Only the most sophisticated research brain imaging can routinely discern this level of physiologic/anatomic abnormality. At present, diagnosis is made through a comprehensive battery of cognitive and performance testing disclosing the large number of poor scores across many domains of brain function. Professionals in psychiatry, psychology, speech and language pathology, and occupational therapy, who can work as an interdisciplinary group to assemble the entire picture of disability, best accomplish this battery of testing. The battery is helpful not only in establishing that brain dysfunction is the basis of the adaptive difficulties faced by the patient but also serves as a template for an individual intervention program [9]. As this capacity for identifying a FASD diffuse form of brain damage is very limited, the condition is largely and tragically unrecognized as the ultimate cause for the behavioral, mental health and cognitive damage that it produces.

Birth mothers of those with FASD are patients themselves

Studies of birth mothers of children diagnosed with FASD show that they are patients too. Most frequently, they have lost custody of their children when the child is brought for diagnosis. In these studies, the birth mothers came from every walk of life but had similar histories of extreme abuse over their lifetimes and mental health disorders, and a significant percentage, perhaps half, were suspected of having FASD themselves; they were socially isolated and had few resources. They often reported that, when they sought mental health treatment, they were redirected to substance-abuse programming first and when they sought substance-abuse treatment they were redirected to mental health. Generally, they were best cared for by health and social service agencies when they were pregnant. The picture that emerged was one of alcohol use as a self-administered drug treatment and pregnancy as a self-induced intervention. These women often had an alcohol-exposed pregnancy, lost custody of the child and had another exposed pregnancy. Rarely, if ever, did these women drink in pregnancy to deliberately harm their unborn [10,11].

Every child diagnosed with FASD is a biomarker for a mother who may have FASD herself, probably has significant health and mental health issues, and is at high risk of producing more children with FASD. Prevention of FASD is urgently needed to save innocent children from a lifetime of suffering and to aid their parents with their own conditions, but this is impeded by a vicious cycle. Without an adequate FASD diagnostic capacity, the fundamental cause of the condition goes unrecognized and resources are not provided to increase capacity. Even so, prevention efforts must be strategically increased.

Dose–response

Alcohol teratogenesis occurs through a complex equation of alcohol dose, timing in gestation, maternal metabolism and fetal resistance [6]. While alcohol is sufficient to damage the embryo/fetus alone, it is often the case in human pregnancies that alcohol exposure occurs with other exposures that might potentiate alcohol’s effects. This all produces a relative risk for FASD with no dose-exposure pattern alone predictive of certain embryo/fetal injury and no dose-exposure pattern alone predictive of certain safety. When the Surgeon General of the USA recommended avoiding alcohol in pregnancy altogether [12], it was not because all alcohol exposure was equally dangerous, but because “no drinking equals no risk” and remains the only totally accurate public health statement that could be made.

Need for a comprehensive approach to FASD prevention

It may be helpful to think of FASD prevention as needing to target three groups of women with very different direct approaches and three other groups for help with indirect intervention. First, there is the group of women who are at high risk for having children with FASD. These are women who are addicted to alcohol, drink heavily and frequently, and have the social profiles described previously. These women are unlikely to be capable of changing their habits during a pregnancy by themselves. Studies suggest that they drink because they feel that they need to and hope against hope that the unborn child will be alright [10]. Second, there is a group of women who consume high volumes of alcohol in more of a binge pattern, such as college students or young working women who might party heavily on weekends. These women are often not fully addicted to alcohol and would probably intend to avoid alcohol in pregnancy, but may get pregnant unintentionally and might continue drinking through the first several weeks of pregnancy in this high-risk manner. Finally, there are women who drink smaller volumes of alcohol at less-frequent intervals, thereby putting their pregnancies at a lower or much lower risk. This group is the more likely to have planned pregnancies and to avoid alcohol even before conception or to stop drinking after minimal exposures. They are the only group of these three who might be able to fully respond positively to direct alcohol cessation messaging campaigns.

At the same time, indirect intervention efforts need to be directed to include men and women who do not drink (or are not getting pregnant) but who care about the women who are at risk for an alcohol-exposed pregnancy. How can we teach this large group to show appropriate and effective concern and support? Similarly, how do we teach a wide range of professionals to identify and support women in each of the three groups mentioned? Finally, how do we develop FASD knowledge and effective intervention in a wide variety of programs that are seeing women for other purposes – for example, health, mental health, substance abuse, victimization, housing, employment, criminal justice and drunk driving? These programs could and should be doing important simultaneous identification and FASD prevention work.

There is much to be done and some modicum of work has been accomplished with each of these groups and many approaches have shown merit. However, no country, or region within a country, has developed a comprehensive approach to FASD prevention nor maintained any prevention campaign for a long period of time. Little of the prevention work has been evaluated for effectiveness, cost or sustainability. Arguing about whether to advise women not to drink at all or to drink in small amounts during pregnancy is a question that only deals with the lowest risk group of women in the first place. This diverts us from the real problems that must be solved and the real work that needs to be done.

Our society is now facing so many enormous problems. However, one of the resources that will help us to solve these problems is the intelligence and skills of our children. We need every one of them. Additionally, we have declining resources for helping disabled people throughout their lives, especially when they could have been fully productive members of society. Let us move the FASD prevention strategies beyond a distracting argument and get to work.

Financial & competing interests disclosure

The author has no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

No writing assistance was utilized in the production of this manuscript.