What adoptive families should know about:

Fetal Alcohol Syndrome

Fetal Alcohol Syndrome (FAS) is one of the leading causes of mental retardation in the world.  FAS is caused by a mother's consumption of alcohol while she is pregnant.  FAS is not a natural phenomena and it is preventable.  The incidence of FAS varies greatly depending on the population being studied.  The rate of FAS has been documented to be between 1.4 and 15.0 per 1,000 live births.  The variation can come from the region studied, the ethnic background of the individuals, and the socio-economic status of the group.  FAS occurs twice as often as Down Syndrome and five times as often as Spina Bifida.⁵

In western France in 1968, a physician named Lemoine first noticed that there were similarities in the facial features and other physical and behavioral characteristics in children born to alcoholic mothers.  It wasn't until 1973 that Jones and Smith came up with the term Fetal Alcohol Syndrome to give these similarities a name.  It was at this point that Fetal Alcohol Syndrome started gaining the attention of doctors. 

How Does FAS Occur?

The effects of alcohol on the developing fetus can be devastating.  Studying the effects of alcohol has proven to be very difficult due to the many variables involved such as the age and weight of the mother, the amount of alcohol consumed and when during the pregnancy the alcohol was consumed.  During the first trimester of pregnancy the face and organs of the fetus are forming.  It is at this early stage of pregnancy, even before a mother may realize that she is pregnant, that the "face" of FAS is formed.  Also at this time, birth defects can occur in organs such as the heart and kidneys.  It is in the third trimester when the brain experiences tremendous growth.  Alcohol exposure during this time can result in severe brain damage.  

Alcohol has been shown to cause problems with the function of the placenta and can cause the umbilical veins to collapse.  The result of this can be poor oxygen and poor nutrition to the developing fetus.  

While no one can predict the exact effects of a mother's drinking during pregnancy or the quantity of alcohol it takes to cause severe damage to the fetus, all indicators seem to point to binge drinking as having the most damaging effect.  Studying the effects of alcohol consumption on a developing fetus is very difficult for many reasons.  A high percentage of the expectant mothers who consume alcohol do not receive pre-natal care.  They often do not admit to their alcohol consumption or may not even know the actual amount of alcohol that they have consumed.  The fact that every mother and developing fetus are different makes it more complex.  While doctors know the timeframe when key development in a fetus occurs, this development will still vary in every case.

How is FAS diagnosed?

According to the Fetal Alcohol Study Group of the Research Society of Alcohol  there are three important categories of diagnostic criteria for Fetal Alcohol Syndrome.⁸  A child, to be diagnosed with FAS must have at least one item from group A, one from group B, and at least two items from group C to be considered to have FAS.  

1. Pre-natal and post-natal growth retardation determined by looking at the weight, length or head circumference of the child.  The measurements will be below the 10th percentile after taking into consideration any correction to the age due to pre-maturity.
2. Central nervous system dysfunctions seen as neurological abnormalities, microcephaly (head circumference below the 3rd percentile), developmental delays, cognitive impairments, or behavioral issues.
3. Facial features such as a poorly developed or absent philtrum (the ridge between the upper lip and the nose), small eye openings, thin upper lip, and a flat midface.   

There are many other physical symptoms that are related to FAS such as:

Diagnosing FAS should be left to professionals because there are many other factors that can contribute to the look of a child that have nothing to do with a child having FAS.  For example, children who are adopted out of environments such as orphanages where there is severe neglect and/or malnutrition may be very small and have measurements that fall below the 10th percentile.  A child's heritage may cause distinct facial features such as a flat midface or small and slanted eyes.   There are other syndromes that cause a child to have similar features to FAS but they are not related to FAS in any way.  Children often lose their philtrim and their upper lip gets very thin when they smile.  How many children do we all know that have big "cheesy" smiles?   They may not have FAS, they may just be happy!  

If you are concerned that your child or potential adoptive child may have Fetal Alcohol Syndrome, you should consult with a specialist.  There are many resources available to help you to locate a professional in your area.  This is not a diagnosis that should be taken lightly or done in haste.  This is definitely not a diagnosis that should be made by a  layperson.

What is FAE?

FAE stands for Fetal Alcohol Effect.  That usually refers to a child who has known prenatal alcohol exposure,  is experiencing the problems associated with prenatal consumption of alcohol, and does not have the associated facial features of Fetal Alcohol Syndrome or FAS.  

How does FAS effect development?

The effects of alcohol on a child's development can be staggering.  Many children with FAS have low IQ's and are considered mentally retarded.  No two children are affected in the same way however there are many similarities in the way these children behave.  

FAS does effect development. There have been many scientists who have studied human development.  Each theorist tends to focus on a different part of development such as cognitive development or social development.  As a result, there are many good diagnostic tools that can be used to determine your child's developmental level.  These developmental tests should be administered by professionals and the results should be reviewed in conjunction with other assessments such as hearing tests, eye tests, EKG's, echocardiograms, CT scans, and a physical exam to confirm a diagnosis.  

There is a high incidence of Attention Deficit Disorder (ADD) or Attention Deficit Hyperactivity Disorder (ADHD) among individuals with FAS.  Children with FAS may also exhibit delays in fine and/or gross motor skills and have speech disorders.  FAS children show delays in reaching their developmental milestones.

Many of the developmental disabilities and delays  associated with FAS are not noticed until the child reaches school age.  At that time they may appear to be lagging behind their peers, have trouble focusing in class, be considered disruptive, have trouble making friends, and have problems learning.  The results of the developmental screening tools are often very helpful in determining a treatment plan for a child.  An individualized education program is important for a child with FAS.  The emphasis of this plan should be on practical goals and should include life skills.

One thing is for certain, all children diagnosed with FAS will have some form of developmental delay, behavioral issues, and/or learning disabilities.  

What are some common issues facing a child with FAS?

There are so many ways in which a child exposed to alcohol can be effected that it is virtually impossible to list them all.  This list is not meant to be used as a diagnostic tool and it is not by any means a complete list.  This list is just meant to give you a look at some of the typical problems associated with FAS as well as a look at issues that parents of FAS children may have to deal with on a daily basis.  

What are some common issues facing an adult with FAS?

The issues an adult with FAS may face can be more traumatic than those of a child. The general public is less tolerant of poor behavior in adults because they believe that an adult should "know better".  But the reality is that people with FAS don't know better and they can't know better.   

The myths of FAS

The birthmother of my child drank so the baby will have FAS.

Just because a mother drank, does not mean a child will have FAS.  The major determining factor of an FAS diagnosis is if the mother's alcohol consumption caused facial deformities, growth retardation and defects in the central nervous system, developmental delays, or behavioral issues.  The final diagnosis of FAS needs to be made by a trained professional.

I will be able to tell as soon as the baby is born if he has FAS.

Oftentimes it is hard to tell if a newborn has FAS.  Many infants have similar facial features that have nothing to do with alcohol exposure but have to do with heredity, type of delivery, and size of the child.  In many cases it isn't until the child is a bit older, even toddler age, that FAS can be diagnosed because the diagnosis involves symptoms other than the facial features.

The birthmother drank alcohol but my child doesn't have FAS so he will be fine.

Just because a child does not have FAS does not mean that he will be fine.  The effects of alcohol can be devastating on a child's developing brain and other organs.  The child could have a multitude of problems from physical ailments to cognitive, emotional, behavioral and developmental issues.  Also there have been cases noted where the mother did consume alcohol during pregnancy with no long-term effect on the child.  These cases however are rare and should not be considered the norm.  Any time you are considering adopting a child and you know that the mother consumed alcohol, you should be prepared to parent a child who has been damaged by the drinking.

There is nothing on the medical of my child that mentions the mother's use of alcohol so I shouldn't have to worry about FAS.

Unfortunately, many times the information received on children available for adoption can be inaccurate.  Sometimes this important information is not passed along and sometimes the mother purposefully leaves the fact that she drank alcohol off of the information provided about the prenatal period.  In some cultures, the effects of alcohol on a developing fetus is not known by the majority of women due to a lack of education on the subject so they may not realize that it is important to communicate the consumption of alcohol during pregnancy to a doctor, hospital, or orphanage.  Sometimes the children are found abandoned and nothing at all is known about the parents or the child.  This can make diagnosis of problems extremely difficult.   

My child just has FAE so it won't be as bad.

Fetal Alcohol Effect (FAE) is not a mild case of FAS.  The long-term effects can be just as disabling and just as difficult to deal with as a child with FAS.    

It is better to adopt an FAS child as young as possible so he has every chance to get better.

Children with FAS don't get better.  You can't "fix" all of their problems. While some of the physical defects, such as cleft palate, can be repaired, the brain can not be repaired.  Research has shown that adopting a child at a young age can be beneficial because you have a greater chance to provide structure, nurturing, and opportunities for growth and development that may help the child to overcome difficulties later on in life.  There is no proof or guarantee that a child with FAS adopted as an infant will be any more successful in life than a child with FAS adopted when they are older.  The key to success seems to be a highly structured and consistent environment in which to live.  The effects of alcohol will affect a person from birth until death.

Medications will make my FAS child behave.

While it is true that many children with FAS end up on some psychotropic medications to help with behavior management, there are many other challenges these children face that can not be controlled with medication.  There is no magic FAS pill.  

I just received a referral of a 10 year old little girl with FAS.  I just don't see it in her face so the diagnosis must be wrong..

As a child ages, the facial features most prominent with FAS may become less noticeable.  As a body ages, the structure of the face may change, for example, the chin and nose may become elongated.  This can change the entire look of a child's face.  Using the face as a definitive diagnostic characteristic may no longer be a straightforward task.  

I have adopted a child who was diagnosed with FAS so I have to make it work.

Parenting a child with FAS is not an easy task.  Many adoptive parents jump into this without looking into the lifelong consequences of prenatal alcohol exposure.  A structured and controlled environment is very important for a successful placement.  Providing this structure in a normal family environment with other unaffected children is not an easy thing to do.  FAS children need to have different rules and consequences for their behavior that are different than those of a child without FAS.   Parenting a child with FAS can be overwhelming.  Seeking professional help and talking to other parents of FAS children may help a you to cope with this difficult situation.   This support can be invaluable in making the placement successful.  

There are times when a placement is not successful and it is in the best interest of the child and the rest of the family to re-home the child.  No parent should consider themselves a failure if they realize that they can't continue to parent a child with FAS.  Many times friends and family don't understand why you would consider no longer parenting a child with FAS because they aren't the ones living with the effects of FAS on a day to day basis.  Professionals can help you to determine what is in the best interests of all parties involved.  

Resources

If you are considering adopting a child with FAS, you should do your homework.  There are many invaluable resources on the internet that can help you to learn more about FAS and what it like to parent a child who will some day become an adult with FAS.  A few of these resources are:

References

Ashford, J.B., & LeCroy, C.W., & Lortie, KL.(Eds.). (2006).  Human behavior in the social environment:  A multidimensional Perspective.  Belmont, CA: Thomson.

Information on Fetal Alcohol Syndrome obtained from the following websites:

1. http://www.nofas.org/, July 14, 2006
2. http://fas-info.uwe.ac.uk/, July 14, 2006
3. http://www.cdc.gov/ncbddd/fas/, July 14, 2006
4. http://www.russianadoption.org/fas.htm, July 14, 2006
5. http://www.alcoholmedicalscholars.org/fas-out.htm, July 14, 2006
6. http://en.wikipedia.org/wiki/Fetal_alcohol?syndrome, July 14, 2006
7. http://uwnews.washington.edu/ni/article.asp?articleID=5290, July 14, 2006
8. http://pubs.niaaa.nih.gov/publications/arh26-4/282-286.htm, July 14, 2006

Photo Credits

All photos were contributed by anonymous donors and used with their express permission.