Fetal Alcohol Spectrum Disorder 101

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 FASD Videos "The InvisibleChildren and Families of FASD"

The Invisible Children and Families of FASD part 1

 

The Invisible Children and Families of FASD part 2

The Invisible Children and Families of FASD part 3

The Invisible Children and Families of FASD part 4

 

 

The Invisible Children and Families of FASD part 5

The Invisible Children and Families of FASD part 6

 

 

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 A mother talks about her pregnancy experience

 

 Fetal Alcohol Syndrome & Spectrum Disorders / FAS FASD Video

 

 

 

 

New science on fetal alcohol exposure

New science on fetal alcohol exposure
December 3, 2007
Larger view
The Safe Passage study is the largest of its kind and will follow 12,000 pregnant women. Monitoring the fetal heart beat is part of the study. (MPR Photo/Cara Hetland)

New science on fetal alcohol exposure

by Cara Hetland, Minnesota Public Radio
December 3, 2007

When a pregnant woman drinks, she risks giving birth to a child with permanent brain damage. Doctors and those who work with these children are learning more about what is called fetal alcohol spectrum disorders. Research projects around the world aim to learn more about what happens when a fetus is exposed to alcohol.

Sioux Falls, S.D. — Researchers know, just by comparing two brains, which one was exposed to alcohol. The alcohol-exposed brain is smaller, smoother, flat.

Children with full fetal alcohol syndrome also have distinctive facial features -- their eyes are close together and the area beneath their nose is flat.

HOW DOES ALCOHOL AFFECT THE BRAIN?

Jeff Wozniak, a neuropsychologist at the University of Minnesota, wants to look below the surface. A machine similar to an MRI lets him zoom in for a closer look at the brains of children between the ages of 10 and 17 who were exposed to alcohol before birth.

"What we're doing is looking at a milder group of children, who have some abnormalities in terms of their cognitive development, their intellectual development. They have less obvious physical findings," says Wozniak.

The cutting-edge project doesn't aim to diganose fetal alcohol spectrum disorders. Rather, Wozniak says, it's a way to understand what happens to the brain when a pregnant woman drinks.

Wozniak says the microscopic brain tissue he's studying is surprisingly like the children -- disorganized.

"We associate that with less efficient handling of information. It shows up in terms of differences in processing speed, and in some cases, differences in concentration skills. And it may also contribute to some of the other cognitive problems that we see," says Wozniak.

Wozniak is studying children in the Midwest, while other researchers travel the world to understand how to better diagnose alcohol exposure.

FAS IN OTHER COUNTRIES

Dr. Eugene Hoyme, chairman of pediatrics at Sanford Health, is known around the world for developing diagnostic criteria for this disorder. Hoyme says many countries deny alcohol consumption during pregnancy is a problem.

Hoyme uses Italy as an example, where drinking wine has been part of the culture for 2,000 years. He says many doctors refuse to even discuss the effects of that behavior.

"We did a study and the prevalence is 2 percent in Italy, and 1 percent in the United States. The Italians still have a hard time believing that's really true, and it's just because [wine] is like mother's milk to them," says Hoyme. "Part of it is, as a society we don't accept alcohol is a problem and we don't do a good job educating physicians about it."

Hoyme says while alcohol use is accepted in nearly all cultures, it's most prevalent in the villages of South Africa. As a result, there are more children in that country who are alcohol-exposed than anywhere else in the world. Eight percent of first grade children in South Africa suffer from brain damage, and Hoyme says the rate is so high because many of the farm workers are paid in wine.

Hoyme is trying to find a way to diagnose children earlier -- perhaps in infancy.

"If you can identify a child very early in life, and you can institute early intervention, then perhaps in the long run the outcome will be greatly improved," says Hoyme.

EARLIER DIAGNOSIS MEANS EARLIER TREATMENT

Early intervention means teaching the child techniques to better understand what is happening around them. For a child with FAS, it's a life of confusion and poor judgment. Many of these children have a hard time in school.

According to Marcia Maltaverne, an education specialist with the South Dakota Center for Disabilities, FAS kids are usually hyperactive and they fidget. These are signs often misinterpreted as bad behavior.

"They can't really tell you, 'Oh, I'm overloaded with sensory stimuli.' We need to educate first the parents, and the service providers," says Maltaverne. "Then we need to educate these kids themselves to recognize, 'This is my disability. These are the things I'm really good at. These are things I need some help with, and when this happens this helps me.'"

Maltaverne says the solution can be simple, like giving the kids a quiet place to calm down or even a ball to squeeze. She says earlier diagnosis would help parents and children learn these tools earlier, so by the time they're in school they know what works best.

MAJOR NEW STUDY UNDERWAY

One of the groundbreaking studies into fetal alcohol exposure is taking place in Sioux Falls. The Safe Passage study is the largest of its kind, and will follow 12,000 pregnant women over the next seven years. The women are in South Dakota, on Indian reservations in North Dakota, and in South Africa.

At a clinic in Sioux Falls, a pregnant woman, who wants to be anonymous, lies back in an ezam room. Her gown is raised and her stomach is exposed. She's 22 weeks pregnant.

Kathy Harris, a nurse who helps gather the data for the study, is trying to find the fetal heartbeat. The baby just switched positions so it's difficult to get an accurate reading.

Monitoring the fetal heartbeat lets them detect movement inside the womb. It's all recorded on a computer connected to the heart monitor.

Harris also asks the pregnant woman a series of questions about her eating and drinking habits, and other specifics about her pregnancy.

"We do that three times during the study, and the questions vary," says Harris. "When she delivers we see mom and baby about 12 to 18 hours after delivery. We measure the baby's vital signs and respiratory rate. We take its temperature and blood pressure. We watch any movement. Any time the baby whimpers, sighs, suck, move its head, cry we record it."

What they're looking for is the maturity of the baby's central nervous system. They'll see mom and baby again and have several phone conversations for a year after birth. If the baby dies, they'll do an autopsy.

It's a way to have what's called forward data, instead of looking back after something bad happens. It's a large study that will try to answer several questions -- including why some children exposed to alcohol develop FAS and others don't.

"I think that's a question that remains unanswered for medical and educational communities, " says Amy Elliott, the project's coordinator. "I also hope to provide some further definition around other disorders in the FASD family."

Elliott is also looking at how alcohol and drug use affect child mortality, like stillbirths or Sudden Infant Death Syndrome. Elliott says they're including alcohol and drug use in the study because drinking alcohol doesn't exist in isolation.

It'll be years before any conclusive results are available from these studies. One thing seems to be consistent for many researchers looking at fetal alcohol syndrome -- the more they reach out to women and talk about the dangers of drinking and pregnancy, the more likely it is there will be fewer children who need their research.

CBC: FASD Family Story


Manitoba producer Suzanne Dufresne brings Shelagh the story of Russ Hilsher. He's part of the first generation of children diagnosed with fetal alcohol syndrome. The term was first used in North America in 1973 by doctors in Washington State. It was a diagnosis that no one could have predicted would have such far reaching and devasting effects.
http://www.cbc.ca/soundslikecanada/media/20071024FAS-Dusfresne.ram

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 A Mothers Story:  by Bioclyde

 
 I have met this courageous woman only by way of an online support group called FASLink. Her online name is Bioclyde. She is honest and insightful and brings great wisdom to our group. Her contributions have often brought me to tears. She is the biological mother of a child with FASD. By getting to know her, and learning her story, I have found more compassion  and understanding for biological mothers. It is my hope that you will too. In a recent e-mail giving me permission to post this article, she informed me that she is now "30 years sober and still alive and kickin". If you would like to e-mail her, you can reach her at  bioclyde@msn.com. Please tell her you read her article on this site.
And here is her post:


 Once again I have been given another year of sobriety. This year I celebrate 29 years without using drugs or alcohol. Each year since I joined faslink I want to share my thoughts and feelings with faslinkers. I don't do this to boast, I do it out of necessity.

 I come from a fairly dysfucntional family where sharing emotions meant yelling and screaming, where compassion never existed. At a very young age I was a sex toy for one of my siblings and when I tried to disclose the situation to my mother...in her innocence, she didn't respond and blamed me (5 at the time) for causing this to happen. I was hurt, and became very sad inside, so I kept quiet. By the time I reached my teen years my anger had grown but instead of defending myself I hated myself. I was an "A: student in school, always in the top 3, yet I couldn't find a way to ease this terrible pain inside. I was confused and had no where to turn. By the age of 9 I had already found booze, and from the very first sip I liked the warm feelings inside...I felt brave again and I could conquer my "problems." At 14 I got drunk, I had absolutely no intention of drinking...it just happened. I was an emotional wreck already, but became brazen with alcohol in my system. Within a year I became suicidal and I was placed into a Mental Insitute...the records state that I had a " paranoid flavour to my talk." It also describes the rages I had..I still don't remember much of those years...probably because of the 5 to 10 meds I was given. I refused to go home, yet I never once mentioned the insest to anyone. I bided my time, and each time I was allowed home for the weekend I would find a way to escape in the bottle. I can't recall a time that I drank that I didn't get drunk. No one knew, and no one even suspected I was drinking. I did a little research and found out that no one could keep me committed in a Mental Health institute if I was able to support myself financially...so by the age of 18 I found a full-time job and signed myself out!

 My drinking continued on a regular, weekly basis. Each pay day I went out with my boyfriend and we drank. I began getting frustrated because no matter how much I drank, I just couldn't seem to get drunk...so I began drinking more. By the age of 25, every saturday I bought a dozen beers, and drank all of them except 1 (for the next day). I needed them just to "warm up" before I went to the bars. This was my rountine every single week, friday & saturday I drank...sunday I didn't, and monday I went to work. My drinking progressed and eventually I drank daily, I wasn't drunk just "under the influence" It got the point where I was drinking from morning until I passed out, come to, and drink some more. By the age of 26 I was living on Skid Row, and I was like this up until October 1978 when I got sick, and discovered I was nearly 4 months pregnant. I immediately stopped drinking, found a place to stay...but alas, alcohol had taken control over my body. At 27 weeks I got drunk because I didn't know that just one drink got me going and no matter how much I wanted to stop, I just couldn't do it. My son was born at 35 weeks gestation. He was small, jittery and I was petrified. When I held him in my arms for the first time in my entire life I felt love for someone. He was a special gift. My problem was, although I just couldn't stay sober I still didn't know I had a drinking problem. I got drunk one more time, but this time something was different. In the middle of this state of drunken stupor I remembered I had a baby, and I remembered I had left him with my sister. I went looking for him, stoned out of my head...It isn't clear exactly what happened and I am only sayin what I was told by others.

 It was a chilly night that April, in 1977. I woke up sitting in a bar/restaurant, wondering where I was?? There were ( what I saw) what seemed like 50 coffee cups in front of me, someone was speaking. I looked up and my Dad ( the only person who ever showed me the right kind of love) was standing in front of me. Tears were streaming down his cheeks, I was confused, why was he so sad? he kept saying, "Give me the baby, give me my grandson...please!" I couldn't understand. Finally, I remembered and looked down...there was my tiny baby shivering in only a diaper and a thin shirt on his back. He was only a month old. I handed him to my Dad, who wrapped him gently in a warm blanket. I will never forget the words my father spoke to me that night, they saved my life. he said, "Claudia, I love you, why didn't you tell me you drank this much, why didn't I know?" Then he looked at me with a love I won't forget and said, " I will only say this once, you better get help for your drinking otherwise I will make sure you never get to keep your son." With that he asked me if I was ready, I must have said yes because I came too sitting in my parent's kitchen. That happened to me a lot, I had terrible black outs when I drank. I was told I sat there for hours not saying a word, then I turned to my mother and told her I was going to contact AA. All she said was, " Finally!"

 I have never had a drink since. I struggled over the years with mood swings, emotions and reality. One by one I deal with them daily. I have come to terms with my past, and I have no regrets. I suffer from the disease of alcoholism. It's a medical condition that can be fatal. I was diagnosed with a serious liver disease at the onset of my sobriety, but somehow I am still alive. I suffered brain damage, and a chemical imbalance. I won't take meds. I was told 29 years ago that my life would get better, and it did. I was told that if I worked the program, I would begin to change, and continue to change...and that promise came true too. I have no magic solution, just a trust in a power greater than myself and the unconditional love from strangers. I discovered that if I wanted to be happy the only thing I could change was me, and I learned how to forgive my mother...she could only give me what she had received. My son is well and happy now. It was hard to raise him because he too was exposed to alcohol, I had to learn about my own disease before I could parent him and help him reach his own potential.

 Life today was good. I had a good day, and I stayed sober one more day. I have no clue about tomorrow, and yesterday is gone. I learn from my mistakes and that is what makes me grow in spirit. Thanks for reading this far.

Sincerely,
Bioclyde

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