Tag Archives: FASD Awareness

FASD Impacts You, But You Don’t Know it (Nora Boesem) – 48th Video Series

This is a truly touching story of a foster mom talking about the struggles of her little girl with FASD.  Her daughter, Arianna, was born 13 weeks early with every organ in her tiny body affected by alcohol.  She was at one point asked to come say goodbye to her dying daughter while in the hospital but miraculously comes back.

Arianna’s story is not unique to her.  Thousands of baby who were exposed to alcohol during pregnancy go through the same thing.  Would you help educate the public about the dangers of alcohol consumption during pregnancy?

 

 

 

Zika virus is not the birth defect risk Scotland should be most worried about

Alcohol, not the Zika virus, is the Olympian challenge for Scotland when it comes to the brain development of babies, according to prevention author Dr Jonathan Sher

Retrieved from: https://www.holyrood.com/articles/comment/zika-virus-not-birth-defect-risk-scotland-should-be-most-worried-about

Dr Jonathan Sher

Images of babies with severe microcephaly caused by the Zika virus are upsetting. Our hearts go out to these abnormally small-headed babies whose lives and life chances have been compromised – as well as to their families.

With the Rio Olympics now underway, the risks of contracting this birth defect causing illness — from mosquito bites (or sexual relationships with those already infected) — has received an enormous amount of media and governmental attention.

Although low – especially in Scotland (and other definitely non-tropical climates) – Zika is a risk. The warnings and advice from public health officials should be taken seriously.

In an era when brain development has become better understood and highly prized, the prospect of life-long, irreversible brain damage to a baby evokes both fear and sympathy.

And yet, it is more than ironic for Scotland’s media to be so bugged about the Zika virus. It is unlikely that even 5 babies will be born here this year with severe Zika-caused microcephaly.

Meanwhile, it is a very safe bet that at least 500 Scottish babies will be born this year with life-long, irreversible brain damage. The main cause will not be mosquitos, but rather alcohol. Fetal Alcohol Spectrum Disorder (FASD) is not new in Scotland, nor (sadly) is the societal and governmental failure to either prevent it or properly support the children and parents affected.

The startling estimate of more than 500 harmed babies born here each year – which adds up to at least 9,000 under 18 year-olds affected in Scotland today — is based upon the most conservative epidemiological evidence from other wealthy, Western nations.

While he was still Scotland’s Chief Medical Officer, Professor Sir Harry Burns declared that fetal alcohol harm is the leading known, preventable cause of learning disabilities. Our current CMO (an obstetrician), Dr Catherine Calderwood, agrees and offers sound advice.

These harmed-before-birth babies innocently, but significantly, widen Scotland’s education attainment gap. For most brain-damaged children, this gap will remain a chasm no matter what is done later. Recent international research has also revealed a strong association between FASD and major (and costly) adult physical and mental health conditions.

As the Christie Commission highlighted five years ago, prevention remains the best choice. So, why is the Zika virus a crisis in the Scottish imagination that must be dealt with decisively, while the reality of FASD remains low on Scotland’s media and governmental priority list?

There are four main reasons:

* Severe microcephaly (like a Down Syndrome or a Thalidomide baby) is immediately identifiable, whereas (except for the smallest fraction of new-borns) fetal alcohol harm is, and may long remain, invisible.  Our emotional impulse to aid them is dulled by the fact that FASD babies usually look so normal and healthy.

* The media ‘debate’ about fetal alcohol harm has been confused and misleading; too often pitting two extreme (and factually wrong) sides against one another. People are left to choose between the scare-mongering that one drink while pregnant at your cousin’s wedding will doom your baby and the wholly–false reassurance that drinking what you want at any time during pregnancy is just fine (or the equally widespread nonsensical belief that having wine every night with dinner isn’t ‘really’ drinking). The truth is that alcohol exposure of any type during any trimester of any pregnancy carries a real, but unpredictable, risk to the baby – with the eventual individual outcome neither a positive nor a negative certainty.

* People prefer to dwell on dangers and risks for which they will never be blamed if the outcome is bad. Think, for example, of the sympathy for the innocent victims of airplane crashes (since passive passengers are never the cause of such tragedies). Feelings tend to be much more ambivalent about car crashes (even though the number of victims – and the level of risk – is exponentially higher for ground transport than for planes). That is because the behaviour of drivers is often the cause; even though these sad events are almost always rightly called ‘accidents’. Zika is analogous to the blessedly rare plane wreck, while FASD is analogous to the all-too-common auto accident.

* The lessons of Scotland’s highly successful public health campaign to reduce drink driving have not been learned in relation tofetal alcohol harm. The two-sided message: ‘If you drive, don’t drink – and if you drink, don’t drive’ helped to spark a dramatic cultural shift toward safer, healthier behaviour. The que sera sera attitude toward pregnancy among many Scots remains a cultural barrier. This ambivalence weakens effective avoidance of pregnancy (e.g. improved choices among Long Acting Reversible Contraceptives) while continuing to drink, as well as effective avoidance of alcohol while actively trying to become a parent.

Does Kirsty (the Holyrood baby) have FASD? If her mother did not drink alcohol during any stage of pregnancy, then the answer is no. If she did, then the answer remains temporarily unknown.

The time is long past due for governmental officials at all levels – and for Scotland as a caring society – to finally take robust, meaningful, early action to prevent fetal alcohol harm and to properly support people whose harm was not prevented.

Doing so emphatically does not mean naming, blaming and shaming the people involved; as that is both cruel and ineffective. Virtually no one has ever intentionally sought to harm a baby by drinking alcohol.

The starting point is to understand that it is a near universal desire (if parenthood is an option) to have a safe pregnancy, a healthy baby and a rewarding parenting experience. Preventing FASD is one crucial way to help parents really get what they already most deeply desire – as well as to save a huge amount of money for the public purse and end the even higher human and social costs. That, in turn, requires helping prospective parents deal well with the forces – individual and societal — driving them to drink (when doing so is contrary to their own long term goals).

Fetal alcohol harm is one, but only one, of the major risks to the pregnancy and birth outcomes Scots want for themselves and their babies. The missing piece across our nation is fully preparing for pregnancy and parenthood across the life course. Fathers truly matter (whether positively or negatively and by their presence or their absence). And yet, the key is for girls and women to feel, and be, empowered and well informed about their reproductive options. Being in control of whether to get pregnant at all; with whom; when; and, under the circumstances most likely to lead to the outcomes they want, has not been a strong enough priority across Scotland. Click here for the rest of the article

Disclaimer:  The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.

Call to action by Fetal Alcohol working group

By Sarah Vance: Fetal alcohol syndrome is a disorder caused by a mother drinking alcohol during her pregnancy; the risk increases with the frequency and amount of drinking.

The condition can create physical, intellectual, and behavioural problems in the children born with it. A person may have a life-long learning and problem-solving disability. In other words, it is a serious problem for both the sufferer and society.

There are 300,000 diagnosed people living with FASD in Canada; 130, 000 live in Ontario, where the ratio of those affected is one in a thousand children.

 

Image result for Isolation and loneliness are depicted in this image by graphic artist Ren Lonechild, which shows a woman drinking during her last trimester of pregnancy, thereby risking Fetal Alcohol Disorder to her baby. Lonechild is a graphic artist who lives in North Hastings and uses traditional pencil sketches to portray social and political issues. Photo by Ren Lonechild

Isolation and loneliness are depicted in this image by graphic artist Ren Lonechild, which shows a woman drinking during her last trimester of pregnancy, thereby risking Fetal Alcohol Disorder to her baby. Lonechild is a graphic artist who lives in North Hastings and uses traditional pencil sketches to portray social and political issues. Photo by Ren Lonechil

 

The Ontario government has initiated 25 cross-ministry roundtable sessions to facilitate dialogue amongst service providers. Out of these sessions, a provincial Fetal Alcohol strategy is being developed; it is set to launch this month.

In Bancroft, a small working group has begun addressing local needs. They’re working out of LifeHouse Support facility on Bridge St.
Maryann McConnell-Post and Betty Ann Cornelius have been instrumental in spearheading the call for action, which seeks more consolidated support mechanisms for families coping with the long-term effects of fetal alcohol syndrome disorder.

“I have reached out to over twenty organizations, making telephone calls and sending emails,” said Maryann, an educator, who is hoping that the provincial strategy will result in initiatives to bridge local gaps. “Over the years I have watched other communities obtain funding, but year after year, I see little action taken in our region.”

Last Monday, community support workers from CanGrands (a support organization for grandparents and Kinship families who are raising grandchildren or extended family members), joined with The Ontario Early Years Centre and North Hastings Community Integration to identify regional barriers, and to pursue outcomes sought by local families and children who were also in attendance.

“Our goal is to establish a regional advisory group, combined with a parent caregiver support group, with partners in Picton and Belleville,” said Maryann. “This is an issue which affects women and we would like to see Maggie’s Tamarack at the table. In the future we hope to talk with policing and parole boards, because there is a ripple effect in the justice system.”
Education and access to support are priorities for this working group, which has identified that geographic barriers present obstacles for families.

“I think we need to start during the early years and also provide a strategy for educating teachers about what Fetal Alcohol is,” said Betty Ann Cornelius of CanGrands, who co-facilitated the meeting on Monday night. “It is not about blaming or shaming, but of providing community education for people from all walks of life.”

“Services like Children’s Mental Health and Bancroft Community Transit do provide amazing supports,” said MaryAnn, who has noted that FASD children do not identify within traditional care models. “Many families are left asking where they fit in.”
Conversations directed at reducing the stigma associated with fetal alcohol syndrome, as well as therapies to address the effects of this disorder, continue to be outcomes sought by families in North Hastings. The North Hastings FASD Support Group has developed a Facebook page to help spread the word.

Equine and animal therapies are some of the steps that local families have taken to pursue enhanced outcomes.

“I am thrilled that we have started the ball rolling, because there is a definite need in the community,” said Betty, who is a provincial advocate for elders raising grandchildren.

Source: http://www.bancroftthisweek.com/?p=6025

Disclaimer:  The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.

EFAN 2016-2017 Membership

Become a member

Fetal Alcohol Spectrum Disorder is a complex range of brain injuries that can result when a woman drinks alcohol during her pregnancy.

EFAN works to enhance the capacity of our community to prevent Fetal Alcohol Spectrum Disorder (FASD) and support those impacted by an FASD through education, service delivery and advocacy.

EFAN members meet once a month to share success and discuss issues that are brought to the table.  Members are also invited to Strategic Planning Meeting to define directions and strategies for the coming year.  Members also attend Annual General Meeting and voting members may vote on important operational and policy issues tabled by the co-chairs of the society.

The membership is for a year and it is from April 1 to March 31st. The Membership fee is $20.

Please click below links to download membership form and invoice.

EFAN Membership Form

Invoice 2016-2017 Membership

Added caution on pregnancy and alcohol

CDC recommendation supported by data, neurologist says

If you’re a sexually active woman of childbearing age, either use birth control or don’t drink. That’s the latest message from the U.S. Centers for Disease Control and Prevention (CDC). The agency cited the oft-hidden damage of fetal alcohol syndrome.

Fetal exposure to alcohol carries a risk at any dose, with the potential to harm both the body and the brain, said Michael Charness of Harvard Medical School, an expert on the neurological effects of alcohol.

The Gazette spoke with Charness, chief of staff for the Harvard-affiliated VA Boston Healthcare System, about the CDC’s recommendations, the response by some that they’re intrusive, and the science behind fetal alcohol syndrome.

020816_Baby_605

Kris Snibbe/Harvard Staff Photographer:  Fetal exposure to alcohol is dangerous at any dose, with the potential to harm both the body and the brain, said Michael Charness of Harvard Medical School, an expert on the neurological effects of alcohol.

GAZETTE: A lot of people have heard of fetal alcohol syndrome, but what specifically is it and what are the symptoms?

CHARNESS: Fetal alcohol syndrome includes a specific pattern of minor facial anomalies … a thin upper lip, short palpebral fissures — the space between the inner and outer corners of the eye — and a smooth nasal philtrum — the little groove right underneath the nose. Having a couple of those facial anomalies is the first criterion.

The second criterion is either pre- or postnatal growth deficiency. There are different systems for defining this, but less than the 10th percentile [of normal growth] is used in the United States. Evidence of central nervous system dysfunction is the third criterion, either structural brain abnormalities or a head circumference that is [in the lowest] 10 percent of the population.

These criteria are being re-examined … to include something important, which is neuro-behavioral dysfunction. The truth is, while the facial anomalies help us identify children who have been exposed at a very specific time during gestation, they’re really not a source of distress, and being small is a minor source of distress.

What really produces the morbidity and creates a terrible burden for individuals, families, and for communities are the behavioral and cognitive deficits that make alcohol-induced behavioral teratology one of the most common — if not the most common — causes of intellectual disability. It’s really the behavior problems that lead to social problems and interactions with the justice system, the cognitive deficits that lead to delayed development, difficulties in school, and ultimately difficulty in getting jobs and being able to function normally in society.

An umbrella term — fetal alcohol spectrum disorder — includes the full-blown fetal alcohol syndrome, which includes the facial anomalies, all the way to neurocognitive deficits that occur in children who have been exposed to alcohol during pregnancy.

GAZETTE: Many people think that alcohol is a danger to fetuses only if the mother drinks heavily during pregnancy. How common is it?

CHARNESS: A method that’s being used more widely now is to do a population-based estimate. A common way that’s been accomplished around the world has been to go into first-grade classrooms in a school district, examine a sample of children and determine the prevalence of fetal alcohol syndrome or fetal alcohol spectrum disorder.

In first-grade classrooms in the Western Cape provinces of South Africa, the prevalence of full-blown fetal alcohol syndrome can be as high as 6 to 8 percent. In the United States, the prevalence of full-blown fetal alcohol syndrome is something like six to nine per 1,000 live births — 0.6 percent to 0.9 percent.

But if you look for the umbrella diagnosis of fetal alcohol spectrum disorder, the data published to date estimates that among first graders in the U.S., the prevalence is somewhere between 2.4 and 4.8 percent — a prevalence that is equivalent to or greater than that for autism spectrum disorders.

Fetal alcohol spectrum disorder is completely preventable, and autism spectrum disorders are not. Hence, fetal alcohol spectrum disorder is an extremely prevalent condition that could be prevented if alcohol were avoided while attempting to conceive or during pregnancy.

GAZETTE: Is that a key driver of no-drinking recommendations? This is something that is completely preventable?

CHARNESS: I can’t say it enough times. This is a devastating disorder that is completely preventable if fetuses are not exposed to alcohol during pregnancy. Alcohol is an environmental teratogen [a chemical that causes birth defects] and FASD is caused by drinking during pregnancy.

Animal studies have established very clearly that alcohol [causes birth defects], it’s not other factors, though certainly other factors can exacerbate the effects of alcohol. There is really no established safe threshold — in studies of cells or animals — for alcohol exposure on brain development. And consequently we really should adhere to the surgeon general’s recommendation that women who are trying to conceive or who are pregnant should not drink at all.

GAZETTE: So a glass of wine now and then isn’t safe? You should avoid it completely during pregnancy or attempts to conceive?

CHARNESS: A very sensitive period for alcohol’s effect on development occurs before many women know they’re pregnant. That’s another reason why [fetal alcohol syndrome] is so prevalent.

The uncertainty over whether even one drink, taken once during a critical period in pregnancy, is safe is a reason for pregnant women to refrain from drinking. At the same time, the uncertainty in some of the clinical data should be of some comfort to women who have already had a drink or two before they discover they’re pregnant.

Let’s consider the risks and the benefits: The risks of moderate drinking are evident in some human studies, and there’s very good evidence for harm in animal studies. But the comparative benefits of drinking are pretty meager, if you think about it. You feel good for a while and then you don’t. Is that worth the risk?

GAZETTE: To segue to the CDC’s recommendation that women of reproductive age who might get pregnant should refrain from drinking, which reaches beyond those thinking about raising a family, is this an unreasonable intrusion, a wise precaution, or something else?

CHARNESS: I think what they’re saying is that women should not drink at all if there’s a chance that they might be pregnant and that when women of childbearing age stop contraception then they should stop drinking.

Click here for the rest of the article

Source: http://news.harvard.edu/gazette/story/2016/02/added-caution-on-pregnancy-and-alcohol/

Disclaimer:  The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.

Northern Ontario pilot project aims to get MedicAlert bracelets for people with FASD

Ontario is testing ground for a new program for people living with FASD reports cbcnews.  Police and EMS personnel will be trained to look for MedicAlert bracelets and how to handle those with FASD.  This is an amazing project and hopefully Alberta will implement it for our population with FASD.

The FASD working group has representatives from Maamwesying Community Health Access Centre (Frances Pine and Priscilla Southwind), Stefanie Reinoso and Catherine Horton (Medic Alert), EMS and Marc Lesage and Chief of Police John Syrette (Anishnawbek Police Services).

Northern Ontario is the testing ground for a new program for people living with fetal alcohol spectrum disorder.

People can apply for a MedicAlert bracelet identifying them as having the brain condition.

This pilot project is being headed up by the North Shore Tribal Council and Anishnabek Police.

Constable Cindy Hourtovenko said if an officer knows someone has FASD, they’re be able to handle them differently.

“Hopefully once they’ve had some education, they’re going to understand to take some time with this individual,” she said.

“Policing can be really fast paced and sometimes we have to learn to slow it down.”

Sometimes people with fetal alcohol syndrome speaking with police have been known to confess to crimes they didn’t commit.

While the program is being based on the north shore, the MedicAlert bracelets are available to anyone with FASD.

Disclaimer:  The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.

Source: http://www.cbc.ca/news/canada/sudbury/medicalert-bracelet-fasd-1.3322528

« Older Entries
%d bloggers like this: