Challenges of Fetal Alcohol Syndrome Disorders
The Effects of Prenatal Alcohol Exposure
As soon as a woman discovers that she is pregnant, she begins to prepare for the birth of her child. This includes ensuring that the baby will be happy and healthy. Part of this planning should include not drinking any amount of alcohol. Women who are hoping to become pregnant should stop completely prior to conception.
A pregnant mother supplies her child with food and oxygen through her blood. Whatever she consumes is absorbed by the placenta, and then it is quickly passed to the baby through the umbilical cord. This includes alcohol: if a woman drinks during the pregnancy, her fetus does as well.
The effects of alcohol use by adults are well known, and the impact on the unborn child is even greater. A baby in the womb is rapidly developing intellectually and physically, and maternal alcohol use during pregnancy may have serious implications for the health of the baby, and later, the child.
There is no safe amount or time during the pregnancy to consume alcohol. Any amount, at any time, can cause serious health problems and developmental disabilities for the unborn child. It may lead to miscarriage, stillbirth, low birthweight, premature birth, small head size, brain damage, issues with growth and development, birth defects like heart, vision and hearing problems, central nervous system abnormalities, and fetal alcohol spectrum disorders (FASD).
Fetal Alcohol Spectrum Disorders (FASD)
Fetal alcohol spectrum disorders is a condition that is present at birth, and that lasts a lifetime. It is specifically related to prenatal alcohol exposure, and results in permanent cognitive, social, emotional and behavioural disabilities in the child.
FASD is an umbrella term that describes a range of effects that can occur when an individual is exposed to alcohol in utero:
- Fetal Alcohol Syndrome (FAS)
- Partial Fetal Alcohol Syndrome (pFAS)
- Alcohol Related Neurodevelopmental Disorder (ARND)
- Neuro-behavioural Disorder Associated with Pre-natal Alcohol Exposure (NB-PAE)
- Alcohol Related Birth Defects (ARBD)
Fetal Alcohol Syndrome (FAS)
FAS is on the most severe end of the FASD spectrum. Individuals with fetal alcohol syndrome have the most prominent physical characteristics. They have distinctive facial abnormalities that are required criteria for a diagnosis of FAS. The area between the upper lip and the nose, the philtrum, is smooth, the upper lip is thin, and the horizontal eye openings are small.
Growth deficiencies resulting in smaller than average height and/or weight, small head circumference and brain size, and central nervous system (CNS) defects (structural, functional and/or neurological) are also symptoms of FAS.
Partial Fetal Alcohol Syndrome (pFAS)
If an individual does not meet the diagnostic criteria for FAS, but has a history of prenatal alcohol exposure, as well as some of the facial features associated with FAS and growth problems or CNS abnormalities, they are considered to have partial fetal alcohol syndrome, or partial FAS.
Alcohol Related Neurodevelopmental Disorder (ARND)
Individuals diagnosed with ARND do not have facial abnormalities or growth deficiencies, but they do have problems with how the brain and central nervous system were formed, and how they function. They may suffer from intellectual disabilities, behaviour or learning problems, and/or nerve or brain defects. These children are most likely to have difficulties with cognitive development, adapting to and functioning in their environment, and managing emotions in order to self-regulate behaviour.
Neuro-behavioural Disorder Associated with Pre-natal Alcohol Exposure (NB-PAE)
This is another disorder that occurs in people who were exposed to alcohol before birth. Symptoms appear during childhood, and include significant impairments in social, academic and occupational functioning.
Alcohol Related Birth Defects (ARBD)
Fetal exposure to alcohol may affect how organs are formed, and how they function. Individuals with ARBD have difficulties with their heart, kidney, bones, hearing and vision. They may also meet the criteria for one of the other disorders on the FASD continuum.
Diagnosing and Treating FASD
FASD is a very complex neurodevelopmental disorder that often goes undetected or is mistaken for another condition such as ADHD. Any FASD diagnosis should be made by an interdisciplinary team that includes a pediatrician, a mental health care provider, a special education teacher, a speech and language pathologist, physical and occupational therapists, and a social worker.
Individuals diagnosed with FASD may experience significant and ongoing intellectual and behavioural challenges. If left untreated, the problems become more complex and difficult to manage. Early intervention and accurate diagnosis are critical to improve quality of life.
There is no single test that can cover the full range of FASD symptoms. Developmental problems, behavioural concerns, and impaired academic performance, in addition to certain physical findings, warrant a thorough investigation by a team of professionals. If a history of prenatal exposure to alcohol exists, a diagnosis of FASD should be seriously considered, and a treatment plan implemented immediately.
When evaluating a patient’s history, specific indicators of a possible diagnosis of FASD include a birth mother with a history of substance abuse, prenatal exposure to alcohol, academic problems, difficulties with focusing and attention, hyperactivity, FAS facial features, high risk behaviours, lack of fear of danger, mental health disorders, failure to meet developmental milestones, and being raised in foster care or by adoptive parents, due the birth mother’s excessive substance use.
Treatment plans must be individualized as each person will have a different aggregate of symptoms, and treatment should be overseen by a clinician who can coordinate access to any necessary supports. These may include developmental services, special education services, behaviour modification, training for parents and other family members, social skills training, medications and/or other medical therapies, transition planning, advocacy in the workplace, and access to community-based programs.
Living With FASD - Children and Adolescents
More research has been focused on the effects of alcohol consumption during the first trimester of pregnancy. Miscarriage and stillbirth are the most serious of these, along with sudden infant death syndrome (SIDS) as a possible outcome associated with prenatal alcohol exposure (PAE).
In addition to fetal death, one of the most tragic consequences of prenatal exposure to alcohol is when an infant is born addicted to alcohol and goes into withdrawal. Symptoms include extreme fussiness, tremors or shaking, feeding problems and diarrhea. The baby will need medical care and may spend the first several weeks of life in a hospital.
As infants, individuals with FASD often tremble, and they may be irritable, have erratic sleep patterns, and sensitivity to sight, sound and touch. Due to poor growth, they may be smaller than other babies, have weak muscle tone and the distinctive facial abnormalities associated with FAS, as well as permanent brain damage.
These babies often have a poor appetite and little interest in food, so feeding can take hours. They may not start walking or talking when it is developmentally appropriate. Failure to thrive, continuing to lose weight longer than is typical after birth, and problems with bonding are also extremely common.
Infants with prenatal exposure to alcohol may be difficult to care for. The problems with feeding and sleeping can be particularly problematic for parents and caregivers. As they get older, the stranger anxiety typically disappears, and there is a strong orientation to people, which may cause problems socially, and in terms of safety.
The feeding and sleeping difficulties continue in early childhood. They may also experience challenges with poor coordination, and have impaired fine and gross motor control.
Socially, these children struggle. They are more interested in people than objects, and may be overly friendly, indiscriminately seeking out relationships and affection. Difficulty following directions, a low tolerance for frustration, and being prone to emotional outbursts create additional challenges when it comes to interacting successfully with others.
Expressive and receptive language are often delayed. Speech may be frequent if the child is talkative, but it may be difficult to understand and lacking in complexity. The child can have a short attention span, be easily distracted or hyperactive, and have difficulties with change.
As they get older, children with FASD require increasing amounts of support from parents and caregivers. Hyperactivity, risk-taking, and impulsiveness can result in them being exposed to danger or hurting themselves and others. Because of their friendliness and lack of discrimination in relationships, they are vulnerable to abuse.
When they begin school, all of these challenges become more pronounced. Sleep difficulties continue, affecting the ability to manage academically. Issues with motor control also continue, resulting in clumsiness and difficulties with printing and handwriting.
Poorly developed social skills and difficulties with relationships result in problems with sharing, taking turns, co-operating and following rules. Other behaviours that impede interactions at school include making inappropriate demands for bodily contact, a preference for playing with younger children, and a lack of understanding of the consequences of behaviour.
Now, receptive and expressive language deficits significantly impact the ability to learn. These children have difficulty processing information and problems with comprehension, and they struggle to learn new concepts, particularly in math. Arithmetic skills are more delayed than reading and writing skills. As concepts become more complex, they struggle more to manage academically.
The challenges of the classroom make poor attention span and impulse control more obvious. Those, combined with poor memory and “flow through” phenomenon, where new information is learned and then forgotten, result in a constant need for reminders.
Children with FASD usually have difficulties in school because it is such a stimulating and overwhelming place. The academic demands are often too much for them to manage, and they require a great deal of support specialized programs.
In adolescence, all of the academic pressures build even more, and children really cannot manage. Homework becomes more frequent and complex as students get older. FASD makes it more difficult to understand, to remember what has to be done, or even to know what questions to ask.
Inability to focus for very long, getting up and moving around because the task is too challenging, and having too much energy and needing to release it, can all impact life in a classroom. These young people also have difficulty with being late, they struggle to remember dates and organize school assignments, and they get confused about sequences of events and information they have heard.
Comprehending anything is challenging, the information is forgotten quickly, and they require constant reminders. At this age, young people may be too embarrassed to ask for help, especially in front of their peers. Often, they will not say anything at all, and they will just give up.
Teachers may misinterpret all of this as laziness, lack of responsibility, or deliberately disruptive behaviour, and they not intervene appropriately. It may be misunderstood by classmates and other adults as well, resulting in conflicts and social difficulties.
With all of these challenges, it isn’t surprising that children with FASD have increased absences and disruptions in schooling. This can lead to suspension, expulsion, and/or dropout.
Mental health conditions such as depression and anxiety, and problems with substance abuse, are common, as are antisocial behaviours like lying, stealing, and inappropriate sexual behaviour. Involvement with the law often begins at this age. FASD also makes adolescents vulnerable to victimization by others.
Intermediate intervention by a multi-disciplinary team is crucial if a treatment plan isn’t already in place.
FASD in Adulthood
As individuals get older and continue to struggle, they often begin to develop new problems, and they may require increasing amounts of support from many sources.
Secondary disabilities occur later in life, and are a direct result of the primary disabilities associated with FASD. These may include mental health problems, substance abuse, difficulties with law enforcement, incarceration, school failure, difficulty obtaining and maintaining employment, sexually deviant behaviour, and the inability to live independently.
Finding appropriate housing and employment is extremely challenging for individuals with FASD. The same struggles with impulse control, social skills, and comprehension that made the classroom such a challenge are even more of an issue in adulthood.
People with FASD do not always have the abnormal facial features associated with the disorder, but cognitively and socially, they behave at a younger level than their chronological age. This creates frustration in others, and is generates conflict. It can also make it nearly impossible to understand the intricacies of managing a job or a household.
Many adults with a FASD condition are completely reliant on someone else to take care of them. Others have challenges with managing daily life, for which they need a lifetime of support.
A Preventable Future
Fetal alcohol syndrome disorders are caused exclusively by prenatal exposure to alcohol. This condition, and its impacts on the the individual throughout their life, are completely preventable.
Raising public awareness and correcting misinformation is key in reducing the prevalence of the FASD group of conditions in the future, as is ongoing research, and education of medical professionals in the most current diagnostic procedures.
Looking forward, research recommends screening pregnant women and new mothers for alcohol use, and intervening with those who show signs of substance use disorders. This provides the opportunity to educate and counsel about the effects of prenatal alcohol exposure, while providing treatment that will reduce the risks for both the mother and the unborn child.
The best way to prevent this heartbreaking lifelong disability is to eliminate alcohol completely before and during pregnancy. No amount of maternal alcohol consumption is safe at any stage of the pregnancy.
Everyone hopes for a healthy baby. In this case, one danger, FASD, is completely avoidable.
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- Picture Credit: The Daily Herald - Suburban Families Cope with Fetal Alcohol Syndrome