The National Organization Of Fetal Alcohol Syndrome And Its Responsibility To Focus On Prevention And Early Intervention-Lauren Goldberg
Birth defects occur in 1 out of every 33 babies born in the United States. Defects account for more than 20% of infant deaths. Seventy-percent of birth defects are from unknown causes, however, some such as those caused by Fetal Alcohol Syndrome (FAS) are preventable. FAS is caused by an alcohol –exposed pregnancy that results in mental retardation and neurodevelopmental disorders such as hyperactivity, distractibility, short attention span, poor judgment, impulsivity, poor social skills, and poor visual and auditory memory. Alcohol exposure directly causes these physical manifestations in addition to growth impairment and craniofacial abnormalities (1). Despite the fact that Fetal Alcohol Syndrome is 100% preventable, this birth defect affects 2 newborns per 1,000 live births in the United States.
FAS occurs more frequently in some populations and will not definitely occur in all fetus’ exposed to alcohol. A study on the permissive factors associated with FAS concluded that predisposing factors such as a mother’s socioeconomic status and culture, along with alcohol exposure, can increase a fetus’ vulnerability to developing Alcohol-Related Birth Defects (2). This phenomenon is evident in the fact that FAS rates were higher in inner-city women of low-socioeconomic status than those among Caucasian upper-middle women who are alcoholics. Since overall infant mortality rates are higher in women of low socioeconomic status, this study also concluded that permissive factors (e.g. ethnicity, SES) are more indicative of FAS development than biological factors. Additionally, factors such as poor nutrition status, tobacco use, and physical and psychological stress may also increase vulnerability to the development of FAS. These factors intensify fetal vulnerability to oxidative stress and free-radical induced cell damage, the two ways in which alcohol produces its teratogenic effects. Without fetal alcohol exposure, FAS does not occur. It is not enough to say alcohol exposure alone causes the development of FAS.
Not only is the incidence of FAS high, but the number of women consuming alcohol during pregnancy is high as well: 45.4% of women consume alcohol in their first trimester and 20.7% of women continue to drink even when they are aware of their pregnancy (3). Counsel against alcohol use is an effective way in which practitioners decrease these consumption rates. However, not all pregnant women seek help from practitioners. Since this disease is preventable, a national organization has been developed to combat it.
National Organization on Fetal Alcohol Syndrome
The National Organization on Fetal Alcohol Syndrome “is dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and to improving the quality of life for those affected individuals and families (4).” With primary funding from the Centers for Disease Control and Prevention and the National Center on Birth Defects and Developmental Disabilities, it is the national voice for FAS prevention and advocacy. The approach of this particular organization is to educate addiction healthcare professionals on how to educate on both prevention and treatment strategies for FAS during prenatal and perinatal consultations. The organization gives workshops to parents on how to care for and nurture their child living with FAS. It also provides resources for women suffering from alcoholism who are pregnant or may become pregnant. The website also provides information about FAS like statistics and distribution materials. They also screen pregnant and non-pregnant women at select community health centers for alcoholism. Finally, this organization also brings together women who have consumed alcohol during pregnancy and may have a child or children living with FAS in a program called Birth Mother’s Network. The NOFAS helps create a positive environment for families but fails in other areas. Many communities may benefit from this type of approach but others need more tailored interventions (5). The NOFAS fails to target women who are at risk for an alcohol-exposed pregnancy prior to conception, relying on women to see out their clinics, and ignore the underlying causes of FAS.
The NOFAS also fails to target women who are most at risk before they conceive. Populations with the highest incidence of FAS are Native Alaskans, American Indians, and African Americans (6). These populations may not be living in a supportive environment that is conducive to change and need a strong presence from NOFAS. There are modifications that need to be made to this approach in order to reduce alcohol consumption during pregnancy and incidences of FAS.
Care is provided too late
A flaw in the NOFAS approach is that care is often provided too late in pregnancies to prevent FAS. The NOFAS relies heavily on the use of prenatal care to educate women on the risks of alcohol consumption during pregnancy and to screen for alcoholism in these women. However, irreversible damage has often already occurred by the time women seek care (7). While prenatal care and screenings are essential, for some women it may be too late to prevent a defect from occuring. The NOFAS must address the importance of initiating prenatal care during early pregnancy and even before conception. For example, 6.5% of African American women failed to receive or received late prenatal care and only 69.3% of American Indian women received early prenatal care (8). Furthermore, women who initiate prenatal care late in pregnancy are unlikely to show a change in substance abuse by delivery (9). NOFAS fails to initiate care early enough to prevent irreversible defects and cause a reduction in alcohol consumption.
Since 49% of all pregnancies in the United States are unplanned, many women are not aware that they are pregnant when consuming alcohol (10). Consequently, FAS might occur before she is even aware of the risk. If a woman who consistently drinks was not planning on conceiving and suddenly discovers she’s pregnant, breaking her habit immediately will be necessary and crucial. Unfortunately, eliminating alcohol addiction, along with other addictive behaviors, is often a time consuming process. The NOFAS does not foster preconception education which is crucial to the success of any program aimed at eliminating the incidence of FAS.
The NOFAS has built their intervention approach based on the Health Belief Model. According to this theory, women will be able to weigh the costs and benefits of drinking while pregnant after they seek help from a practitioner. Accordingly, NOFAS assumes that women will ultimately choose that the risks of drinking while pregnant outweigh the benefits. This theory however, fails to take into account the mother’s relationship with her environment and the biological implications that accompany addictive behavior. It cannot be assumed that alcohol consumption, a highly addictive behavior, will be stopped in enough time prevent FAS. Therefore, this emphasizes the need for NOFAS to educate these populations on the effects of coupling alcohol with unintended pregnancy before they engage in risky behavior. They also need to be given the option of testing themselves for pregnancy before they consume alcohol. This would help to instill awareness every time they drink. In addition, routine testing will allow them to know they are pregnant earlier than they might’ve realized otherwise. The earlier they know, the earlier they can seek prenatal care.
Women often perceive barriers to seeking prenatal care that cause late or lack of initiation. These barriers include lack of transportation, opinions of healthcare, partners’ opinions of healthcare, depression, fear of disclosure, and the fear of medical procedures (11). NOFAS must address these barriers in order to increase earlier initiation. However, motivating women to initiate prenatal care can also be a challenging.
Failure to seek out expectant mothers
Initiating prenatal care is a voluntary and beneficial process. In a study of urban black women, research found that unplanned pregnancies in this population were more likely to be accompanied by alcohol consumption and prenatal care initiation in the third trimester (12). Therefore, the NOFAS is presented with the difficult challenge of getting pregnant women into community health centers and getting them in early. A flaw in the NOFAS approach is that they wait for women to come to clinics on their own rather than actively trying to draw them in. The NOFAS fails to recognize there is little motivation for women to seek treatment early if it at all. In assuming that people are intrinsically motivated, the NOFAS effectively takes the Health Action Process Approach. This behavior change model is often used to predict whether or not a person will modify an unhealthy behavior or initiate a healthy behavior. An important component of the model is the idea that planning facilitates behavior change (11). The NOFAS unrealistically expects that women who have unplanned pregnancies with alcohol use will plan to seek prenatal care. The NOFAS cannot assume these women will plan to take action without offering an extrinsic motivating factor. If this were true, prenatal initiation would be higher and sooner in this population. Since it has been proven that women with unplanned pregnancies are less likely to receive prenatal care than those whose pregnancies were planned and neither population has perfect initiation rates, this stresses the need for the NOFAS to offer another motivating factor (13).
Failure to address underlying causes
Since women often initiate prenatal care after irreversible defects have already taken shape, there is a need for NOFAS to focus on the underlying causes of fetal alcohol exposure (14). A flaw in the NOFAS approach is that they do not attempt to eliminate the underlying causes of FAS. In the fifteen year period from 1990 or 2005 there has been no significant change in the prevalence of pregnant mothers who consume alcohol, therefore, the NOFAS has failed to eliminate the factors that cause an alcohol-exposed pregnancy (15). Educational campaigns have not reduced high levels of drinking during pregnancy. There is a need for the NOFAS to recognize that vulnerable populations such as Alaskan Natives, American Indians, and African Americans, need interventions related to lifestyle modifications. Currently, the focus is on alcohol abuse, but they fail to focus on the underlying problems that cause this behavior. It is estimated that 1 to 2% of women of childbearing age are binge drinking, sexually active, not using adequate protection have had multiple male sex partners in the past six months, have a history of physical abuse, have been treated for drug or alcohol problems, have been treated in a mental institution, and are less educated (16). These are underlying cause s for an alcohol-exposed pregnancy and FAS that the NOFAS has not addressed. These are also the causes that NOFAS fails to focus on. NOFAS should recognize that getting a mother to eliminate alcohol while she is pregnant does not eliminate the environment that may have caused her to drink the first place. NOFAS can prevent alcohol abuse before conception by channeling more of their resources toward empowering women and teaching them to not get involved in drug use, maintain safe relationships, be more sexually responsible, and stay in school. The NOFAS’ goal should be to help women adopt healthy behaviors to avoid risk of an alcohol exposed pregnancy. Primary prevention of FAS must include ways to eliminate these risks before conception (16).
Modifying the NOFAS approach to reducing the incidence of FAS
The NOFAS is a program designed to better the lives of children and families living with FAS and to prevent FAS in expectant mothers. This program must be expanded to include more primary prevention in the form of preconception awareness and interventions. The NOFAS must act more broadly in order to successfully decreased FAS incidence in Native Alaskan, American Indian, and African American populations. The NOFAS must also modify their prenatal initiation approach by creating incentives for expectant mothers.
Priming while purchasing
Women in vulnerable populations need to be reminded they could be pregnant each time they purchase alcohol. Pregnancy is usually not on a person’s mind when they walk into a liquor store. In order to reach women before they conceive, NOFAS needs to permeate their lives in an obvious way and emphasize the importance of early prenatal care initiation. A great way for NOFAS to make their message visible in the community is through local liquor stores. Each time a women purchases alcohol in a liquor store, she should be offered a pregnancy test. Even though she may not take the test, this primes her to think about the possibility she may be pregnant each time she purchases or consumes alcohol. There may come a day when she does accept the pregnancy test after repeated offers. Taking the test will allow her to know sooner than she normally would have. This gets women to think about just how risky alcohol exposed pregnancies really are, and will help them they are pregnancy sooner than later. This intervention will cause people in the community to engage in a discussion about such a seemingly strange occurrence at their local liquor store. If there are incentives to visit a prenatal clinic early in pregnancy, women will be more likely to visit very soon after a positive pregnancy test. It is also important to note that FAS does not only occur in babies with alcoholic mothers. Any amount of exposure can be harmful; therefore any women purchasing alcohol at a liquor store would be impacted (3). As a public health organization, the NOFAS needs to use a “cue” accompanying the purchase of alcohol in order to remind them of the risks associated with drinking while pregnant. Women will be able to develop an increased sensitivity to the purchase of alcohol each time they are offered a cue or in this case, a pregnancy test. Whether a women suspects she may be pregnant, or if she is already pregnant, this cue will force women of child-bearing age to associate purchasing alcohol with FAS (17). This intervention can help NOFAS bring women into their clinics sooner and before a defect has occurred.
It is also crucial to use this intervention as a way to eliminate any perceived women may have to initiating early prenatal care. As part of this intervention, each pregnancy test box will have written on it the services offered by NOFAS. These services will include prenatal care in addition to transportation to and from appointments, financial help to pay for visits, confidentiality on the part of the medical team, and painless medical care. Eliminating these barriers will also help women initiate prenatal care sooner.
Prenatal care initiation
Offering prenatal care is an important and essential service that NOFAS offers at community health centers. Without offering incentives to visit these clinics, NOFAS is running the risk of women seeing practitioners late in their pregnancies because of the aforementioned barriers. The fetus is most at risk for developing FAS in the first trimester of pregnancy (3). In unplanned pregnancies, initiating prenatal care often occurs in the third trimester. In order to get women at risk for an alcohol exposed pregnancy into their clinics, NOFAS needs to offer rewards that would benefit moms-to-be and actively draw them into clinics. An important of this intervention would be offering expectant mothers a free package of pampers every visit. After each trimester of consistent visits, expectant mothers would also receive a large gift such as a baby carriage or crib. Since this would be a costly intervention, NOFAS could partner with a major corporation such as Huggies®. These incentives could also get expectant mothers in the mindset of preparing for a newborn and may foster a maternal drive towards having a healthy baby and changing their risky habits. Expectant mothers will also have a positive attitude toward the prenatal care process and will therefore be more likely to make and follow-through with their appointments (18). Expectant mothers will be also be positively influenced by other mothers in the community who have also had positive outcomes from participation in this program. As a result, initiation prenatal care could become a norm in high-risk communities.
There are many psychosocial characteristics on the part of the mother that can affect the baby’s outcome (19). Therefore, the NOFAS must not only strive towards making the most from prenatal visits, but must also work to better the lives of expectant mothers. Initiation can be encouraged with referrals to food banks, stipends for continuing education, referrals to therapists, and help with employment. Regardless of the outcome after delivery, a healthier mom means a healthier baby. This would help NOFAS bring more women through the doors of the clinics. Additionally, the NOFAS can also strive to decrease the incidence of FAS on a more global level.
Preventing risk factors for an alcohol- exposed pregnancy
From an early age, women need to know they have the power to set goals and make decisions to achieve those goals. Young girls need to have role models and adult females they can learn from. The NOFAS needs to reach out to young teens living in vulnerable communities to help prevent them from engaging in risky behaviors associated with an alcohol exposed pregnancy. Empowering young girls and promoting healthy behaviors decreases the risks associated with an alcohol-exposed pregnancy. With this approach, the NOFAS will indirectly decrease their risks of having a child born with FAS. From eighth grade and throughout high school, young girls need hear first-hand accounts from women of what it’s like to be an alcoholic, or in an abusive relationship, or even what it’s like to have a child with FAS. These women would share the story of their struggles, make connections with young girls who need guidance, and encourage them to stay in school. In contrast, adolescent girls also need to learn from women who’ve set goals and achieved their dreams. They need to see women who’ve faced adversity and risen above it. Public health practitioners need to instill messages of empowerment and give young girls the self-efficacy they need to achieve goals. Students’ self-efficacy is linked to achievement goal orientation and self-regulation. Students who believe they can succeed will set goals and show more resilience when they encounter difficulties. This self-efficacy however, must grow from praise and the successful completion of smaller goals in a classroom setting. If students learn to overcome small obstacles and succeed in small ways, they will build the self-efficacy needed accomplish larger endeavors and to overcome larger tribulations (19). Girls will learn their decisions in the present can affect their future. By building stronger communities, NOFAS can indirectly decrease the incidence of FAS.
There is a great necessity to understand the types of environments women with alcohol-exposed pregnancies come from. Lack of both maternal and paternal education is also an important risk factor to consider (20). NOFAS must address this issue before they can see a marked decrease in alcohol consumption in pregnant women. They must use their time in the classroom to encourage young girls to finish high school and pursue higher education. With these guest speakers, the NOFAS can them what it’s like to succeed in life and what it is like to constantly struggle. The NOFAS’ mission should apply this broader approach to their interventions if they want to see better outcomes in their target populations and a decrease in the risk factors associated with an alcohol-exposed pregnancy. This type of primary prevention is a crucial component of any public health organization, including the NOFAS.
Looking towards the future
The NOFAS has a responsibility to all women, especially those of vulnerable populations, to expand the care they provide. They must recognize women need to be drawn into their clinics at the onset of pregnancy. The risks associated with an alcohol-exposed pregnancy are far too great not to act quickly. By eliminating some of the barriers to care the NOFAS will reach more women. The rewards and expanded services that go along with attending prenatal care will not only draw expectant mothers in, but will improve their quality of life. This will allow the NOFAS to have a “complete care” approach in which they will provide prenatal care and help provide a better life for a mother and her unborn child.
The NOFAS also has a responsibility to address the underlying causes of FAS if their goal is to decrease its prevalence in high-risk populations. They need to help empower women so they can live a life free of drugs, physical abuse, sexual promiscuity, and achieve higher education. The NOFAS will not only be decreasing the incidence of FAS but will provide guidance for young women in need of a supportive environment.
If NOFAS chooses to stand idle, this will mean thousands of new birth defects each year from a disease that is 100% preventable…thousands of newborn babies forced to bear the burden of a preventable disease for the rest of their lives.
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