From Minnesota Public Radio's special report Fetal alcohol syndrome: The invisible disorder:
When a pregnant woman drinks, she risks giving birth to a child with a broad range of health problems, including brain damage. People with fetal alcohol exposure are an invisible population -- underserved and misunderstood.
As I listen to the stories and look at the images, I have to wonder if we can fully understand and prevent Fetal Alcohol Syndrome. Alcohol is irresistible to some and others might not heed the warnings (there's even an information campaign) that it's 100 percent preventable.
That's just about prevention - I'm reading about those living with FASD as an adult and the education challenges faced by kids with FASD. How can society address this? Is it left the individual?
What do you know about Fetal Alcohol Syndrome? Do you have any personal experiences with FASD? What ways would you propose to prevent it, and provide the best possible opportunities for those already diagnosed?
_____________
Julia Schrenkler
Minnesota Public Radio Interactive Producer


Comments: 39
Prevent it?
You got to be kidding.
Women have what is called free will.
Then, on top of those people, you'll find people who don't have medical attention during the pregnancy are more likely to drink, smoke, and do other harmful things while pregnant. I'm not saying all women who have no medical attention do that, but it's more likely.
Talk to me again about how one prevents those health events, let alone Alcohol which is so much more abused than crack.
The problem with FASD is that it has a victim that society has to deal with. Many times the parent either can't or won't take care of the child.
You can double the amount of money and programs but I'm not sure you can eliminate this. With freewill and the general deterioration of society, you are still going to have it. With today's youth growing up in an instant gratification society, where self esteem is given and not earned, where kids aren't taught to be self sufficient and make good decisions, where political correctness has instilled moral revelantism instead of good or bad behavior, it can only get worse.
As far as prevent it, I can't argue there. Your sister must have a unique perspective on substance abuse during pregnancy - if she's interested in joining the discussion I'd be glad to read her perspective.
Dena, are you in contact with children who have FASD?
Do you believe that addiction will always trump education, Heather? Can education and medical care help? South Dakota jails pregnant women who drink. (See Cara Hetland's reporter's notebook) Is this the best course of action?
That's just the money - it doesn't really reflect on the individuals' quality of life.
Alcohol has been abused in society for ages, and FASD has always been there.
Freewill.
If a woman never begins to smoke, drink, or use drugs then she won't need to worry about it. And her life will most likely be better too!
Alcohol abuse! Don't like it? Tough, you and I can't stop legal activity. And about my sister, I don't want to ask her to join, as we don't see eye to eye, however, she will also tell you that the folks in this country don't understand what individual responsibility is at all. For they just want to have fun.
Thank you Julia for sharing this thought provoking article, I hadn't heard the series on the radio so this was particularly interesting.
Secondly, I was reading in the paper about training dogs. The dog trainer said that it doesn't help to punish instinctive behavior. So, when a dog snaps at a child who is provoking it, it's not recommended to punish the dog. Likewise, according to Dr. Hoyme (I think), it's not recommended to punish the child who misbehaves in light of his or her FASD. That's revelatory. And one I don't think many parents or teachers realize. In fact, I believe that's true of many actions (read misbehaviors) that our children do. But what ought to be occurring is redirection and guidance. Too often, imo, adults resort to punishment when guidance is what is needed.
Thirdly, I can't praise highly enough the adoptive parents of these children or the teachers who choose to work with them. What a fantastically tough job! I see a huge need to provide support and respite care to the full-time caretakers of children with FASD.
Also, I think that determining the feasibility or humane-ness of jailing mothers-to-be who drink needs compassionate dialogue, not flippant remarks such as the ones I've seen here.
There are also some doctors who still tell women that it's okay to have a glass of wine to "wind down" while she's pregnant.
My ideas for prevention? Start with any alcohol/drug prevention program and invite parents of children with FASD do a "show and tell" type thing so people see this is a very REAL problem.
Target ALL people. Men are not off the hook here. If they know a woman has been drinking, THEY can prevent a child from having to live with FAS by saying NO to sex. Pollyannish? yeah.
Doctors could be providing information to their patients at an early age. Birth control isn't 100% reliable, but doctors could give information as they write the prescriptons. Remind women that just because they don't PLAN to get pregnant, oops happens. Work on the PRE-conception care.
I drank whilst pregnant with my first child. Didn't know I was pregnant, was a bridesmaid at a wedding, had a few drinks. As soon as I discovered I was pregnant, I didn't get near the stuff. But it's also true about doctors sometimes saying a little bit is okay. It's been several years since my last pregnancy, so I'm not sure what the current line is on that, anymore.
Gary wrote: I don't think any behavioral change - particularly an addictive behavior - will ever be completely phased out. Being someone who would like to gamble for good, I'd like to see us all improve the odds and reduce the number of incidents.
*Sigh*, Richard, you're right. Lots of people do things to feel good, or at least to feel numb. I'm sure that includes those of us in this discussion, at some point in our lives. BTW - If you don't want to invite your sister to the discussion I'll respect that.
"If a woman smokes or drinks and can't stop doing so for at least 9 months, then she shouldn't get pregnant." - Janet H. Janet, I'm curious, what would you say to the guy? I'd like to think there's a partnership in that.
Hmmm. You've got me thinking, Susan. I don't know that people can really discuss the point of jailing mothers-to-be to prevent substance abuse. The aspects of freewill, addiction, and personal bias jumble together and often come out flippantly or angrily, or not at all.
I'm glad you spoke up about the elements that struck you. You really do make a good point about cause and effect at the parent's level, whether or not that's a symptom of FASD.
Regarding teaching and guidance of FASD children/young adults, I gave particular notice to the fact that some of the kids would have P.E. up to 4 times per day, just to work off stress and energy. Can you imagine needing to exercise that much just function in a social setting? It made me wonder about non-FASD kids not getting enough exercise and how it affects their focus as well. BTW, thank you for following up after Barb's reply.
Barb, welcome to the discussion. Thank you so much for sharing your personal experience. Your 4 1/2 year old grandchild is very, very lucky to have someone concerned about their well being. Do you think a "show and tell" type of prevention campaign would truly work in a scared-straight sort of way?
Funny, we both sort of made the same point about how men are involved. I'd guess... that addiction and biological urges will win out. This is a difficult topic at best. Pre-conception requires pre-thought, but we can only (and perhaps sadly) agree to that point.
http://danandbarb.com
Upper left hand corner click on FASD. It's a pdf file with many things very specific to our little guy, but that many others go through too. We did the presentation for the Head Start staff in-service so that they would learn WHY T. does some of the things he does.
Recently my 26 forever partying bachelor son spent time with us and T. He was thoroughly exhausted after a few hours. It was the first time he spent time with him, so it was an eye opener for him to see I wasn't making things up. He's probably still going to drink despite seeing what drinking can do. But, I made sure to use that time as a "teaching moment" even for him.
Thank you Julia, for getting the word out. Every person who tells someone about FASD may just save a yet to be born child from living with it. That makes it all worthwhile.
http://members.aol.com/Alphamom33/birthmom.html
My 18 year old son was exposed to alcohol prenatally. I asked my DR specifically about using alcohol during pregnancy, and he told me casual use was not a problem. My son has had many struggles as a result of my ignorance, including his own battle with chemical dependency. I will always wonder about what impact my alcohol use had on his addiction (and other) issues. This could have been prevented. Trust me, if my DR had given me a different message, I would have heeded it.
Women having alcohol exposed babies ARE NOT all irresponsible and/or chemially dependent. I am a well-educated, professional, middle-class woman who learned about FASD the hard way.
It's a very hard lesson to learn in the School of Hard Knocks.
You are exactly right. Not all doctors are giving women the right information but we continue to blame and shame women when their children are born with FASD.
Check out this doctor's website- http://www.thebirthcompany.co.uk/Pages/pregnancy_information.html
Click on "Is alcohol bad for my baby?" and read his response. Not only is he saying that 5-8 drinks a week won't hurt the baby, he is saying it relaxes the mind and the womb! Dangerous misinformation.
I am the adoptive mom of two children with FASD. I wish the doctor listed above could spend a day in my shoes.
Stating this kind of inflammatory remarks about women and drinking led to a number of callers suggesting that 1) a waitress is more qualified than a pregnant woman herself to make decisions about alcohol use and 2) that pregnant women who drink should be incarcerated for the duration of their pregnancy in a "treatment center."
There went my civil rights.
See this article on MPR's own website:
***
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."
***
I would appreciate solid data backing up the assertion that there is no safe level of drinking during pregnancy - I think we know that moderate drinking, one to two drinks a week does not harm a fetus.
I'd like to point out that in 2005, the U.S. Surgeon General issued an advisory to all pregnant women and women who may become pregnant that states in part: "... More has been learned about the effects of alcohol on a fetus. It is now clear that no amount of alcohol can be considered safe."
If you still don't believe the statement, I encourage you to visit the Web sites of the National Institute on Alcohol Abuse and Alcoholism (www.niaaa.nih.gov), the Centers for Disease Control and Prevention (www.cdc.gov/ncbddd/fas/), or the Substance Abuse and Mental Health Services Administration (www.fascenter.samhsa.gov).
Well I have read these statements too. But several feminist critics have pointed out that it is striking that unlike the use of other substances for other populations (we know that alcohol causes much more damage to people's lives through drinking and driving than through FAS but adults are still allowed to make their own decision about how much will cause them to be intoxicated) or even substances that dangerous primarily to pregnant women(say - mercury levels in Tuna, which pregnant women are advised only to eat like once a month) a blanket message about alcohol is given as if women are not smart enough to understand concepts like moderation. In addition, the concept of FAS was coined by a doctor who noticed that some children who had certain symptoms also had mothers who admitted to drinking. That isn't exactly a scientific diagnostic process that rules out environmental, genetic factors, etc.
And I have to say I'm not very convinced by the Surgeon General's warning. Of course it is easier to regulate women's behavior than to supply preventative heath care. Government bodies exaggerate things all the time - like leaving your child in its car seat while asleep could cause it to strangle. I at least understand these statements to be exaggerations for legal reasons so I can't sue the manufacturer.
Alcohol cannot said to be tetragenic like other substances which cause birth defects to the vast majority of fetuses exposed to these substance.
Another issue is that most of the women I know drink sparingly during pregnancy - maybe one drink a month or so. But of course we never tell our doctors that for risk of being shamed. So I don't believe that accurate information exists about the effects of moderate alcohol use. Is it a coincidence that most of the children born with FAS seem to have addicted mothers who are also not receiving prenatal care and who live in poverty?
Are there any documented cases of FAS in the children of women who were taking prenatal vitamins at conception, had regular medical care, and who ate healthy diets during pregnancy and who also occasionally drank? Quite frankly, the statistic of 2% of Italian babies having FAS should set of critical thinking alarm bells for you as a reporter, Tom. If lets say 70% of Italian women drink moderately during pregnancy - a glass of wine with dinner even every day, then the rates should be much, much higher than 2% of children.
As far as "Most of the children born with FAS seem to have addicted mothers who are not also receiving prenal care and who live in poverty?" Where did you get that from? FASD doesn't know nationalities, income levels, religions, or education levels. It only knows that alcohol can effect the development of an unborn child. Those effects range from "minor" indiosyncrasies (sp?) to major developmental issues.
I have more to say, but there's this little guy with FASD who is having a meltdown at the moment and my husband needs a break.
To Barb (and anyone else reading this) - I appreciate that you have your own perspective as a woman raising a child with FAS - and I do think that the birth defects attributed to FAS are real.
However, there is a large body of literature about the controversies within FAS. I'd recommend you read _Message In a Bottle: The Making of Fetal Alcohol Syndrome by Janet Lynne Golden.
She writes that "Early claims about FAS inspired a worldwide research enterprise that ultimately document the effects heavy drinking on the fetus but left open to interpretation the effects of light or moderate drinking. In the United States, the growing political, medical, and cultural position of what might be called "the fetal citizen" made it imperative that alcohol, rather than extremely heaving drinking during pregnancy, be seen as a threat." pgs. 13-14.
So basically all my posts have just been about trying to open up some space to question the alarmism about FAS in light drinking during pregnancy.
I would want to refute the idea that a pregnant woman is a kind of manufacturer of a fetus and if any defective product is produced then she can be held open to prosecution. What about women who don't take folic acid and have babies with spinal bifida? Should all women over 40 be sterilized since their chances of having a baby with Down Syndrome increase by a huge percentage?
You take all kinds of risks when you are pregnant - to eat fish, to drink contaminated water, to eat soft cheese, to take the right kinds of vitamins, to get good medical care, etc. There is no sure method for having a perfect baby.
My doctor told me during my most recent pregnancy that taking opiates or drinking isn't necessarily harmful during pregnancy. People with chronic medical conditions take pain medication while pregant. But the difference between them and an addict/alcoholic is that women without a substance abuse problem are eating normally, and have probably planned the pregnancy, or found out about it early enough to take prenatal vitamins, etc. So in fact FAS might be partly attibutable to fetal manutrition.
I can find no peer-reviewed medical evidence that suggests that light drinking during pregnancy causes any harm. We are an alarmist society - and I am sick to death of all of the Danger! Attention! Alarm! stickers on almost everything by baby owns.
On the issue of FAS, I would just like some evidence to back up the idea that yet another thing is harmful to children, yet another way mothers are at fault, and yet another way women are labeled selfish for being human.
I drank small to moderate amounts of alcohol during pregnancy, as my Dr. stated that the alcohol use would not impact my developing child. Was he ever WRONG. I wish I had known then what I know now. He is 18 now, and has been involved with the courts since age 14, along with school suspensions, dropping out of school, and struggles with CD issues.
I cringe when I think of how difficult may decision to drink during pregnancy has made his everyday life. I took prenatal vitamins, ate well, had all of my prenatal visits. My son has grown up in a middle class household and community, with two parents.
Please do me a favor and tell your Dr. that he should get more informed about the dangers of alcohol use during pregnancy. How many other women will he mislead.
Note to women: If your Dr. tells you it's okay to drink alcohol during pregnancy, DON'T BELIEVE HIM/HER!!
Here is an article about alcohol use and conduct problems.
Youth Conduct Problems Associated with Perinatal Drinking
Join Together Online www.jointogether.org November 7, 2007
Research Summary
Conduct problems among children rise in proportion to the amount of drinking their mothers did when they were pregnant, according to researcher Brian M. D'Onofrio, Ph.D., of Indiana University and colleagues.
Science Daily reported Nov. 6 that researchers found the correlation between problem behavior and perinatal drinking persisted independently of other factors, such as drug use, education level, and intellectual ability. For each day per week that women reported drinking during pregnancy, attention problems and impulsivity increased among their offspring.
Siblings exposed to more alcohol during pregnancy had more conduct problems than brothers or sisters who were exposed to less alcohol, researchers found.
"The findings thus support a strong inference that prenatal alcohol exposure causes an increased risk of offspring conduct problems through environmental processes," the authors said. "Therefore, prevention efforts should continue to target alcohol consumption during pregnancy."
The research appears in the November 2007 issue of the Archives of General Psychiatry.
I am new to gather.com. I am a college student doing research on FAS for formal research paper. While doing my research I ran across this website and read the article as well as everyone's comments. I was woundering if you can give me some of your insites on this subject other then what you have already posted here. I am trying to gather enough research and information to support all the facts and arguments that i present to my professor. If any one could help I would appreciate it.
Thank You,
Tina Penney
the questions were:
1.How can society address this?
to begin with, I propose "inter-state" communication, sharing openly of research obtained and cooperation between councils.
*there needs to be state legislated signs posted on all venues that sell alcohol, liquor or
spirits, warning against the consequences of drinking while pregnant.
*we must limit the "convenience" of alcohol consumption by removing it from convenience
stores.
*fasd screening needs to start in the preschools. fasd advocates need to visit EVERY grade school , middle school and high school, and community center to educate thoroughly with qualified speakers and proper materials.
* penalize, re-educate, and reform pregnant mothers who are discovered to have blood
alcohol levels in their bodies.
* educational radio and tv commercial broadcast education across the U.S.
2.Is it left the individual?
partially. that question reflects the answer. the individual is highly affected on a personal level, the community feel the repercussions secondly. Lets look at the past outcome thus far.
3.What do you know about Fetal Alcohol Syndrome?
I'm still learning.
4.Do you have any personal experiences with FASD?
Yes.
5.What ways would you propose to prevent it, and provide the best possible opportunities for those already diagnosed?
not many if any have gotten to this final question. hmm. easy to point fingers at drunk
mamas, or pat oneself on the back for all you’ve done for this sector of our communities ,
one adoption at a time.(not that im not grateful to those families, but I know some pious adopted families personally that seem to have the attitude of the fasd adult making mistakes make the "normal" people look better. while institutionalizing the young fasd adult but not really "helping" the individual feel better about themselves - jut another pity case. Yes, I am talking about that side of things. although ADULT FASD may always be "lower creatures" as I once heard referred to, these people need treated with respect. If we are actually going to create change we need to be able to look at all aspects and attitudes we posses in our current positions - some negative some positive.
( come on people you’re not trying very hard. and we assume all you’re brains are intact and in good working order.) I admonish you for your passive attitudes and not taking a more active and serious stand.
*gov needs to recognize this disability in all 50 states and they need the same support
as anyone else with disabilities are allowed as well as there needs to be county support groups established that could be a branch that shares the buildings, and share resources of alcohol recovery groups.
*College grants and learning extensions should be provided for these people who are able to keep their grades at a passing average and show the dedication and willingness to stay in school.
the attitude needs to change: I ask society to stop looking at them as a burden, they have aspirations like everyone, and are not all violent offenders. I ask society to stop
appearing ashamed of the individuals with fasd, by ignoring this condition, and start to
help them by extending some of the programs that are already established for others - to
the fasd community.
Finally I ask that neurologists be more willing to screen people that come to them for fasd screeningeven though there are not support organizations in every state.
Oh and BTW doctors that recommend drinking to pregnant women should be sued for malpractice. Take it away fozzie...
http://danandbarb.com/
Then click on "FASD."
Our adopted twins are 15 now and sophomores in high school. Their 15-year-old birth mother had little or no supervision and eventually became a ward of the state herself.
When they came to live with us they were 4-1/2 months old and weighed only 10 and 12 pounds. Years later, they had overnight EEGs which showed abnormal brain activity. In the meantime, they have been diagnosed as ADHD. They have experienced a wide range of diagnostic and therapeutic services. Currently they have individual education programs and attend normal high school classes, with additional counseling and support on the side. So far they have not had to repeat a grade. YAY! They take several potent drugs several times a day to help with impulse control and attention. As reluctant as we were to look at these drugs, they have been a godsend in limiting violent outbursts, repetitive motion tics, and involuntary verbalizations.
These teens have shown a tremendous amount of courage in coming to grips with their challenges. They are high-spirited and we are doing what we can to encourage them.
I don't hear you if you are in denial, or are holding to a "civil rights" position on alcohol or other drug use during pregnancy. Actions have consequences. Learn about them. Help give kids a better future.
Correlation is not causality. If A and B co-occur, it does prove that A caused B, or B caused A. It may well be that F causes C which causes A, and E causes D, but only when it occurs with C within a particular critical period, which may need to have been preceded by a previous prolonged exposure to G.
What does all that mean? Just that, as the posts have indicated, the contributing causes for FAS , and other "disorders," are bewildering. So what do we do as a society to support and encourage full and equitable entry and involvement in our community?
As members of a free society, we have the right to make decisons that may have disasterous results. And yes, we are accountable for our choices. But see the paragraph above...
And my other one (I guess this makes three...or more): Do we know what the effects are of alcohol use/abuse by fathers? They submit half the child'sgenetic code, right? Maybe, just for sake of argument by the devel's advocate, we should curtail the rights of men who might possibly father a child, and lock them up if their child is born wiith a disability, or develops mental illness, including addiction, late on in life.
Right.