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Fetal Alcohol Syndrome

Fetal Alcohol Syndrome Poster Child
Breeyona London

Fetal Alcohol Syndrome Poster Child
Matthew Miller

Introduction

Fetal Alcohol Syndrome (FAS) is a disorder characterized by mental and physical birth defects as a result of a woman drinking alcohol when she is pregnant. Fetal Alcohol Effect (FAE) has the same symptoms of FAS, however, the typical physical characteristics seen in children with FAS are often absent in children with FAE, and other symptoms associated with the syndrome sometimes appear in a less severe form.

It is estimated that FAS is the leading known cause of mental retardation, with an occurrence rate of 1 in 750 live births. It is estimated that 5,000 infants are born each year with FAS and 50,000 with FAE. Approximately 30 to 40 percent of all women who drink heavily during pregnancy will have a baby with FAS. It is found in all races and socioeconomic backgrounds.

The effects of a woman drinking alcohol when she is pregnant differ throughout the stages of the pregnancy. Early exposure presents the greatest risk for serious physical defects. In the first trimester, alcohol can affect the way the cells are growing, altering tissue growth in the fetus. The alcohol also diminishes the number of cells growing in the brain, causing the brain to be smaller. In the second trimester, miscarriage is the biggest risk when a woman is consuming alcohol. Finally, in the third trimester, the fetus has increased chances of neurological and growth deficiencies when exposed to alcohol.

 

Features and Characteristics

The following characteristics are commonly found in children with FAS:

 

Diagnosis

The diagnosis of FAS can be made by meeting specific criteria: positive maternal history of alcohol ingestion, prenatal growth deficiency, specific craniofacial abnormalities, and neurodevelopmental impairments. To more accurately diagnosis FAS, the Fetal Alcohol Syndrome Diagnostic and Prevention Network (FAS DPN) has developed a new tool called the 4-digit diagnostic code. The code describes the magnitude of each of the four criteria shown above - "1" being an absent characteristic and "4" being a strong presence of the characteristic. The codes, therefore, range from 1111 to 4444.

 

Treatment

There is no cure for FAS, however, surgery can repair some of the physical problems and a special school program can be developed to assist with mental and physical development. It is important that early intervention be provided to the child with FAS. Recent research has shown that development and stimulation programs begun between birth and age 5 have made an enormous difference. If possible, children with FAS should receive a thorough medical and psychological assessment in early childhood and those who will be involved with the child (parents, teachers, therapists, etc.) should work together to come up with a realistic lifelong plan for the child with FAS to minimize the development of secondary disabilities. It is important that life skills (academic, daily living, personal/social, and occupational skills) are addressed and focused upon to help students function in the community with minimum supervision.

There have been several teaching recommendations for children with FAS. Following are some key areas which may need some special attention:

 

What to Expect

Adults with FAS often have difficulty maintaining successful independence. They have difficulty staying in school, staying employed, and sustaining personal relationships. Without the proper treatment and supervision, individuals with FAS are at risk of developing mental illnesses, getting into trouble with the law, abusing alcohol or other drugs, and having unwanted pregnancies. However, when given the proper education and training, many adults with FAS can learn to live and work in the community.

 

Personal Stories

I am the birth mother of a 5 year old girl with FAS. Along with FAS, she has several other problems. I was 27 years old when my daughter, Breeyona, was born and I was a drug/alcohol user - heavy user is more like it. I was drinking a 5th of tequila plus beer a day. I never had any idea I was pregnant; I never gained weight, never missed a cycle - nothing, and there was no movement until after I found out I was pregnant. I found out I was pregnant the 3rd week of January and I had my first ultra sound on the 16th of February. I gave birth to Breeyona on February 22. She weighed almost nothing. While all the babies where sleeping in the hospital, I was walking the floors, and at the time, it never dawned on me that my daughter was going through withdrawals. The thought of how she was hurting kills me to this day. She had a poor suck, she didn’t walk until she was over 2 years old, she didn’t talk until she was almost 3 years old, and so on and so forth. She is just now potty trained but not at night and she still sleeps in bed with me, as she has an attachment disorder and can’t be out of my sight. I had fought for 4 years to get someone to realize that she had a problem. What it was, I didn’t know, but I knew my daughter had a problem. I soon realized that getting someone to listen and help me was going to be a bigger problem.

Breeyona has a lot of problems and may never live alone. She needs 24/7 supervision because she has no sense of fear nor danger, she doesn’t know cause and effect, she doesn’t think to eat because she doesn’t like food or the texture of it, and she doesn’t feel pain (but if you lightly touch her, she will act like you have beat her). However, she has come a long way. She just learned to dress herself and feed herself with a spoon. She is actually 5 years old, but mentally she is more on the level of a 2 year old. That doesn’t stop us! She may not know her ABC's, but she turns the TV on. She doesn’t know her numbers, but she can tell me when she has to go potty. It has been a long haul, but for everything my daughter can’t do, there are 2 things she can do and I am very proud of her. Had I known what drinking would have done or that I was pregnant, I would have never done it. I live with the guilt every day, but I have turned that guilt around to help her and get the word out to other mothers that drinking will hurt their unborn child. I am educating anyone that will listen and wants to learn about FAS. - Saula Nelson

My name is Matthew, and I was born to a birth mom who couldn't take care of me. She had a lot of problems with addiction. She made an adoption plan and she sent me to live with the family that also adopted my biological sister, Alicia. When I was born, my head had no soft spot, so I needed an operation to fix it. I now have a 13 inch scar on my head that I call my zipper. I also had a hole in my heart and reflux. From that, I became failure to thrive and I had all kinds of problems. I never slept as a baby. The slightest noise would startle me. I had a seizure once and it scared Mom and Dad. I didn't walk until I was two years old and got plastic shoe inserts. I learned to talk by Mom and Dad using sign language and pictures to help me focus.

I was diagnosed with FAS at Children's Hospital. I also have ADHD and am being tested for PDD or Asperger’s syndrome. I am obsessed with cleaning floors. All Mom's friends are jealous, but my mom says it's a consolation prize, whatever that is. I also LOVE my sit-and-spin and am on it up to 3 hours a day, singing with my eyes rolled back. Nana says it's creepy. My Grampy fixes heavy machine trucks and I LOVE that, too. Mom and Auntie Jo just went to my IEP last week and had to explain to them why I have to stay in occupational therapy. My sister, Alicia, and I are in karate and it's fun. I love my sister, too - sometimes. - written by Matthew’s adopted mother, Donna Miller

On January 12, 1989, we got a call from our social worker and her exact words were, "Hello Mrs. Gibson. We’ve got a four month old alcohol damaged baby in the children’s clinic, and if you don’t take her, she’ll have to go into a children’s home on Monday." We said "Yes" right away, and made our way to the hospital to meet our "New Arrival." The doctor we spoke to spent almost an hour trying to persuade us not to take her as she was tube fed and his prognosis for her was very low. We ignored him and one week later after learning how to insert her feeding tube into her stomach, we took her home.

The first 6 months were hell - she wouldn’t feed and screamed for 20 out of every 24 hours! Despite the dire warnings of the hospital doctor, she did learn to walk and talk, although much later than normal. Sinja is now 10 years old and the older she gets, the more apparent the brain damage becomes. She can hardly read or write, and gets very annoyed that Ebi (2 years younger) can read and write much better than she. The worst thing is that she now knows she’s "different." She asked me months ago, "Mum, why was I born like this? Why am I not like other kids?" She now knows the cause of her disability and it’s mainly because of her telling me, "Mum, write and tell people that they’ve not to drink when they’re having a baby."

Sinja has to deal daily with teasing because of her looks (normally called "Granny" or "Monkey Face"), her size, or mainly due to her speech impediment (3 operations for a cleft palate and 1 speech enhancement operation), which is also due to FAS. We’ve had great success over the last 2 years with growth hormones and her self-esteem goes up with every centimeter! Sinja’s hobbies are riding (she got her own pony "Felix" who she adores) and being involved with "Circus Kids," where she learns to juggle, ride one-wheel bikes, etc. It’s a great way to burn off all her hyper energy!! Her dream is to one day work with animals and if that’s what she wants, we’ll do our all to help make her dream come true.

We adore Sinja just as she is, but she’ll never reach what should have been her full potential. Please do what you can to make people aware of what alcohol does to embryos, and maybe save another baby from this disability! - Ann Gibson

Kacy, our adopted son, is now 5 years old and will be in kindergarten this fall. Born on February 19, 1994, Kacy was only born 2 weeks early but weighed 3 lbs. His natural mother smoked, drank, and took a variety of drugs right up until delivery... even on the day of his birth to ease the pain of labor. With a 30% chance of survival, Kacy proved his doctors wrong and became our little boy when he was 14 months old!

Every day is a new day and another new challenge, but he copes the best he can considering his disability. The biggest challenges were sleeping and his behavior - Kacy often acts out before his brain can tell him not to. He is eligible for special needs services in the school district because he has FAS. Hopefully, teachers and his peers will gradually learn more about this disability.

I am thankful for magazines such as yours that are willing to educate all of us and can help us understand the nature of this devastating disability that is thrust upon tiny babies who do not have a say in their destiny. - Cheryl Jaco

I am Jessica Grace Stefany and I am 4 ˝ years old. I was born in Stroudsburg, Pennsylvania on December 6, 1993. They really weren't expecting me because my birth mother didn't know she was pregnant until she went into labor. They think I was 2 to 3 months early. Now, I make everyone late all the time so I guess it evens out!! I was born an alcoholic. The minute they cut my umbilical cord I went right into the "DTs." I only weighed three pounds and also had seizures, so they put me on a big helicopter and took me to the NICU at St. Luke's Hospital in Bethlehem. When my blood tests all got done, they found out that, if I was old enough to drive, I had enough alcohol in my system to get me arrested. The doctors there said I have Fetal Alcohol Syndrome.

I stayed at St. Luke's until I was six weeks old. That's when I met my mommy, daddy, big sister and big brother. They were really my foster parents at the time, but, I didn't know that. They came to the hospital to pick me up and the nurse said I was the "most irritable" baby they had ever had there!! Can you imagine that?! If she was going through withdrawal, seizures, digestive problems, sensory problems and had to have the lights on 24 hours a day with all that noise, she'd be irritable too!

Anyway, when I was 6 weeks old and weighed 4.5 pounds, they decided to let me go home with Mommy and Daddy because I wasn't doing very well in the hospital and they thought Mommy and Daddy's house might be the best place for me.

Mommy and Dr. Melzer played "musical formulas" and finally helped my digestive system to improve a little. The hospital told Mommy and Daddy that I was done having seizures and took away my Phenobarbital, so were Mom and Dad ever shocked when, after 1 week with them, I had a grand mal and ended up in the hospital and back on the medicine!

When Mommy and Daddy picked me up at the hospital, the doctors told them I would probably be severely retarded. Mommy held me, got very angry at my birth mother and cried. Someone told her she should read "The Broken Cord." She did. She held me, got angry at my birth mother and cried. Mommy and Daddy prayed. They decided not to assume that I would be severely retarded, but to work real hard with me so I wouldn't be. Every time I learned something new, they held me, forgave my birth mother, and cried. Some nice ladies from Easter Seals worked very hard with me. I began to get slowly better. Mommy and Daddy held me, forgave my birth mother, and cried.

For the first 8 months I was home, I never slept more than 1 hour at a time and never ate more than 1 or 2 oz. at a time. I cried a lot! Mommy and Daddy swaddled me very tightly, held me, got angry at my birth mother, cried and walked around like zombies! When I was 8 months old, I started to sleep for 2 hours at a time and finally weighed 8 pounds. Mommy and Daddy were so excited! Then, Dr. Lilik weaned me off the seizure medicine and I didn't sleep more than 30 minutes straight for two weeks. Guess what? Mommy and Daddy held me, got angry at my birth mother and cried.

In my tenth month, I had a seizure during occupational therapy. This time the doctor put me on Tegretol. Guess what Mommy did? Right!!! All this time, I was also on an apnea monitor, constantly sick, enjoying a major dose of the chicken pox, diagnosed with asthma, and being late (to make up for arriving early) at everything. I rolled over, crawled, sat up, babbled, walked, drank from a cup, fed myself, and talked late. (I'm still working on dressing myself and the good ol' potty!)

For Christmas, I gave my parents 4 hours sleep in a row, in my crib instead of in a baby carrier on their chests in the recliner. They looked unbelievably rested! For New Year's, I gave them a week keeping me company in the hospital with RSV (a respiratory virus that put me in respiratory distress in an oxygen tent).

However, all through this time, I continued to grow and learn. I worked hard. My therapists and teachers worked hard. Mommy and Daddy worked hard, held me, got angry at my birth mother, forgave my birth mother, felt sorry for my birth mother, tried to help my birth mother, cried, and prayed. When I was 2 ˝ years old, we all got adopted! Boy, was everybody happy that day! No crying! I'm doing a lot better, but I still need an awful lot of help. I still have physical therapy, occupational therapy, speech therapy and go to an early intervention center. The government pays for all that. I've been going since I was 10 weeks old and will probably have to keep going for a very, very long time. Mommy and Daddy are learning as much as they can about FAS and are talking to all kinds of people to try to stop it from happening to anyone else and to help grownups learn how to help and understanding kids like me a little better.

I am a little healthier than I used to be, but still take seizure medicine. I get frustrated easily and can't calm myself down very well. I also can't generalize information that is in my mind and I have trouble remembering things. I am usually very happy and Mommy thinks I'm funny. She says FAS stands for "Funny and Sweet." Mommy and Daddy don't get angry at my birth mother anymore because they have learned more about alcoholism and understand that many people get hooked because they figure "It's legal! How dangerous can it be?" Mommy still cries when she sees me with other kids my age and realizes what has been taken from me and that her dreams for me will be very different from the dreams she has for my brother and sister. She also cries with frustration and exhaustion because nobody seems to want to help me unless Mommy fights them first. That's not fair because your laws say I can have the help I need, but nobody wants to give it to me because they don't recognize FAS.

I know that I am more loved and wanted than any child on earth. I know that God created me for a special purpose with a special job to do and we are all working very hard to make sure that I can do that job and that I can have a very happy life! - written by Jessica’s mom, Gladys Stefany

Darlene is six and a half years old. She was diagnosed with FAS just before her sixth birthday. She is my foster child and has been with me for a year. he is a very affectionate little girl who loves to cuddle. She has no fear of strangers and will run to anyone. She doesn't understand boundaries when it comes to people in general. They told me that Darlene had an IQ of 57, and that she would never be able to learn. She is very hot tempered and strong willed. When they first told me that Darlene had FAS, I knew nothing about it. I did as much research as possible, but found most articles just listed the physical effects, not the behavioral. We have had our ups and downs, but Darlene has come a long way.

We started her in therapy; it has done wonders for her. We are very structured and consistent with her and she is now thriving. Darlene just finished kindergarten. She went to a special needs program in the morning and then kindergarten in the afternoon. She is still behind the rest of the children, but has made progress beyond anything we had imagined. She can spell and write her name, and knows most of her letters and numbers. I know this doesn't sound like much but when Darlene came to live with us, she didn't have any concept of letters or numbers. She also has ADHD, Re-active Attachment Disorder and Post Traumatic Stress Disorder. ADHD is very common in children with FAS. She is on Dexedrine for this and it is working great.

I was told that children with FAS don't need much sleep and Darlene fits that perfectly. When she first came to live with us, a normal night’s sleep for her was three to four hours. She never acted tired. We tried Benadryl, but it didn't help much. She is now sleeping six to seven hours a night and we think this is wonderful.

Darlene has added a lot of challenge to our lives but the joy is far greater. This is a very special little girl. - Tammi Brock

We received Anne Marie on New Years Eve, 1991. She was 3 and a half months old, and weighed less than any of our 3 boys had at birth. She couldn't cry or laugh or make any kind of sound, and made no indication when she needed to eat, so we had to set our alarm clock for every 2 hours. She was very stiff, and didn't cuddle up to us when we held her. We knew she was not a normal child, but we didn't know that she had Fetal Alcohol Syndrome until about a year later when we had her tested by a geneticist.

Today, she is 7 years old and is normal in many ways, but has problems in some areas. She is able to read on grade level, but is behind in math. She has problems with balance, and she has trouble understanding speech in noisy environments (like school). She wears an FM Unit at school to amplify the teacher's voice and to block out the shuffling of feet, whispering of other students, etc.

Her official diagnoses are FAS, ADHD, CAPD (Central Auditory Processing Disorder) and SID (Sensory Integration Disorder). The ADHD, CAPD and SID are most likely the results of the FAS. She also has a pseudo-arthrosis of the right clavicle which makes using her right hand a little difficult for her. She is microcephalic.

Her greatest problem is her inability to tolerate overstimulation - tactile or auditory. Overstimulation leads to either withdrawing completely into herself or to rages - temper tantrums.

She also has problems sleeping. The first time in her life that she slept through the night was when she was 6 years old. We were all VERY grateful when the doctor put her on medication for ADHD that also had the side effect of making her sleep at night.

On the positive side, Anne Marie is very kind and generous, loving and gentle. She has many friends and is a good friend, herself. She has good spacial memory, and can remember physical directions well. She can learn almost anything that can be presented visually. She has beautiful thick black hair and big brown eyes that literally sparkle when she smiles.

We hope, through protective parenting and education, to avoid the secondary disabilities that plague so many people with FAS - mental illness, addiction and criminal behavior. We know that she will probably need someone to keep an eye out for her well-being for the rest of her life, since FAS adults typically have problems with judgment, impulsivity and money management, and are particularly vulnerable to people who would prey on their naiveté.

Anne Marie is the joy of our lives, in spite of her problems, and we are very lucky to have been blessed with her care. - Claudia Barker

My 18-year-old son, John, plays the drums. He has his own set of drums in his room and he plays every day - for hours. Now, if you are imagining me with my hands over my ears and my face wrinkled up in a migraine frown, think again. John is pretty good on the drums, and I actually enjoy listening to him as he plays along with the radio or a favorite tape. Part of my pleasure can be attributed to his taste in music, which pretty much matches mine. He likes the Eagles and Yanni, and even plays a tape of Scottish pipers occasionally when he needs to soothe himself with something relaxing.

John enjoys playing the drums - with a passion. In fact, it is one of the few pleasures he enjoys in life. John doesn't have a car, in fact he doesn't even drive. He doesn't have an easy time in school. He doesn't have any close friends, except for his doggy. You see, John has Fetal Alcohol Syndrome (FAS), a disorder caused by prenatal exposure to alcohol that has sentenced John to a life-long hangover. His birth mother's drinking during pregnancy caused John's mild retardation, small stature, unusual facial features, and damage to his central nervous system. Because of FAS, John is not as bright, not as tall, not as good-looking as other teens his age. He has a hard time learning the rules of life, and when he learns them, he has a hard time remembering them. His behavior and mannerisms seem inappropriate to most people, and while he desires to be close to people and has a friendly and out-going personality, others are put off and maybe even repulsed, and they shy away from him. John needs reminders about how to behave normally around people. I give him verbal cues for everything from getting ready for school in the morning, to taking care of his dog, to how to behave in public, to how to interact with company, and so on and so on, day after day. His brain just doesn't function like yours and mine. He seems smarter than he is; he can "talk the talk" but he can't "walk the walk." He has a hard time carrying through from knowing what to do to actually doing it. So John needs to be reminded, consistently and continuously, in order to get through each day. One rule that John has finally learned is to ASK first before playing his drums. So every day, when John comes home from school, he ASKS me, "Mom, can I play my drums?" And most of the time, I say, "Sure, I'd LOVE to hear you play!" And I do love to hear him play. Because I know his drums give him one of the only pleasures he has in life.

My 15-year-old son, who is "normal," plays the guitar, and although his taste in music runs more toward the hard rock and alternative rock that many kids his age like, I still think he's pretty good. Recently his friend, who plays the bass guitar, came over to practice their music, and the two younger-but-bigger boys asked John if he would like to play along with them. John was thrilled. They set up their instruments, and tried a few songs that all three knew. It didn't go as well as they had expected. John is such a good drummer, so they didn't understand why he had such a hard time accompanying them. He would lose the beat in the middle of the song, and by the time he got back on the beat, the song had fallen apart and they would have to start all over. I realized that John could keep the beat only while playing along with a tape or the radio. He couldn't keep a beat on his own.

I guess that's how life is for John. He will always need someone else there to "play along" with him and keep the beat for him. On his own, he will surely fall out of step from the rest of the world. It is so easy for him to become lost in the music of life. I'm happy to be here for John, to help him catch the beat again when he loses it, to accompany him through a life that can bring him joy and success that he might not realize by playing solo.

But what about the other 5,000 children born each year with FAS? What about the 50,000 others born each year with alcohol related birth defects? They are the ones who may appear to be normal physically and intellectually, but who nevertheless have suffered from prenatal exposure to alcohol with similar dysfunction of the central nervous system. These are the kids who are hyperactive, have attention deficit disorder, don't learn from the consequences of their actions, who are too impulsive to think before they act, who are just as frustrated with their inability to control their behavior as everyone else around them. Who is going to help them find the beat? Who is going to provide them with the accompaniment they need to get through life?

It feels good to help guide John through the challenges he faces in life. But somehow, that's not enough. After all, FAS is preventable - 100% preventable. And it's the leading cause of mental retardation in our country. Something is wrong here. Research has shown that there is no safe level of alcohol consumption during pregnancy. The only sure way to prevent damage is to abstain from alcohol during pregnancy. In the spirit of solidarity, I have chosen not to drink, to support others who have chosen not to drink, to make it easier for others, maybe a pregnant woman, to choose not to drink. In the spirit of education, I have chosen to speak out about FAS and alcohol related birth defects, in the hope that an increase in awareness today might promote an increase in the wellness of our community tomorrow. After all, I believe that all children deserve to have a chance at a happy and healthy life. - Teresa Kellerman

 

Resources

If you are interested in meeting other parents and individuals who are involved in raising a child with FAS, the following listserv is available:

FASLINK - Send an e-mail message to majordomo@listserv.rivernet.net. Leave the subject field blank and type "subscribe faslink" (without the quotes) in the body of the e-mail. You will then receive a welcome message with further instructions.

For more information on FAS, visit these helpful sites:

 

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