A champion for health and awareness

Oct 10th, 2013 | By | Category: Connecting With

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Fetal Alcohol Spectrum Disorder (FASD) affects not only the child born with it, but those who are responsible for that child’s care. It is a condition that impacts on thousands of lives in Canada. Elspeth Ross, for personal reasons, is taking a leading role in promoting public awareness of FASD, and works tirelessly to give support to families affected by it. Mary Cook talked to Ross about her work with the organization and the impact FASD can have on a child and his or her family.

Y@H: What exactly is Fetal Alcohol Spectrum Disorder?

ER: Fetal Alcohol Spectrum Disorder (FASD) is the term used to describe the range of disabilities that may affect people whose birth mothers drank alcohol when they were pregnant. There is a wide range of effects. Most people affected do not have the full syndrome, called Fetal Alcohol Syndrome, but rather have ARND, alcohol-related neurodevelopmental disorder. This is an invisible disability because individuals usually do not have a distinctive face, are not small in stature, or mentally challenged and yet have birth defects and brain damage which lead to learning problems and behaviour difficulties.

Y@H: You have a keen interest in an organization called the Fetal Alcohol Spectrum Disorder Group of Ottawa. What exactly is the role of the organization?

ER: The Fetal Alcohol Spectrum Disorder Group of Ottawa provides support and education for families and professionals about the effect of fetal alcohol on individuals of all ages. I co-facilitate the group with Dr. Virginia Bourget, Psychologist. We have been meeting monthly since 1999 at CHEO … the first Tuesday of the month from October until June at 7 p.m. Each meeting has a different topic. We have speakers, videos and discussions and provide handouts. Everyone is welcome.

Y@H: How and why did you become involved in FASD?

ER: When my husband and I adopted our first son at the age of 19 months in 1981, we were told that prenatal alcohol was a factor for him and that our family would need to look for help. That gave us an excellent beginning, which many parents don’t get, since they do not really know until their child reaches school age, or even high school. We later adopted a second child with FASD at three years of age. As the children grew up, I informed myself thoroughly on the subject, and attended many FASD conferences, especially in the west of Canada. As a volunteer educator in FASD, I spread my knowledge and information providing a current awareness service on FASD and alcohol and pregnancy internationally, now through the listserv FASD-Canadian-news. In addition to running our group, I am a member of the FASD Coalition of Ottawa, and am on working groups for the FASD One Ontario Network of Expertise.

Y@H: Does interest in FASD go beyond Ottawa?

ER: From early times it was known that strong drink in pregnancy could harm a baby. But it wasn’t until 1968 in France, and in 1973 in the United States, that researchers published about the damage caused by prenatal alcohol as a syndrome and gave it the name, Fetal Alcohol Syndrome, after its cause. FASD occurs in every country in the world, wherever alcohol is consumed, and the highest levels have been reported in South Africa, which is a wine-producing country. In September an international conference was held in Edmonton where 700 people from 35 countries attended.

Y@H: Are we seeing a decrease in FASD

ER: No. We believe that the rate of FASD is increasing. There is growing concern because women are catching up to men in the amount of alcohol consumed. Binge drinking is increasing among young women and in women aged 25-34, who are working and are used to having one or two glasses of wine or more.

Y@H: How prevalent is fatal alcohol disorder in Canada?

ER: The Public Health Agency of Canada reported in 2005 that FASD affects approximately one per cent of the population. This means that there are at least 300,000 people living in Canada today with FASD. People of all ages may be affected. Recent estimates are that in countries where drinking among women of childbearing age is common, the percentage of children affected is higher.

Y@H: How is it passed on to the unborn?

ER: Findings from basic research have clearly shown that any amount of alcohol can easily cross the wall of the placenta and interfere with the normal development of the embryo and fetus. So it can be said that when an expectant mother drinks, her baby drinks too. Damage can be done very early in the pregnancy, even before a women even knows she is pregnant, because the brain is forming through pregnancy. Each woman is different and affected by many individual factors, such as genetics, nutrition, stress, lack of prenatal support, or exposure to violence, that can all affect a woman’s drinking and health. Heavy or frequent consumption of alcohol in pregnancy increases the risk of having a baby with FASD.

Y@H: What are the effects on a child?

ER: A baby with FASD may appear normal in every way, but have hidden disabilities. Damage may include any or none of these physical signs: low birth weight, distinct facial features, central nervous system abnormalities, heart or other organ defects. The features become less obvious as the child grows older. The primary disabilities of FASD are those that reflect most directly the underlying brain and central nervous system damage caused by prenatal exposure. They include poor executive functioning, memory problems, lack of judgement, learning disabilities, hyperactivity, attention problems, impulsive behaviour, difficulties problem solving and failure to understand consequences. Many children have attention deficit disorder and behaviour problems, but only those who had maternal drinking have FASD. Secondary disabilities are those that individuals are not born with, and that can be ameliorated through better understanding and appropriate support and tailored programming. They include poor social relationships, school disruption, sexual inappropriateness, substance abuse and getting into trouble with the law. People with FASD also possess many talents and successes. They are usually highly verbal, friendly, cheerful and affectionate, caring and loyal and creative in the arts, and with manual and mechanical skills. Both of our sons with FASD graduated from high school, and one from college. Both work part-time and live nearby, so that we are in touch with them almost daily. We help them with things like managing money, filling out forms and getting appointments.

Y@H: Can it be cured?

ER: FASD is a life-long disability. Although those with the disorder face many challenges, they also have many strengths and we need to maximize their potentials.

Y@H: When is it confirmed that an unborn child could have the disorder?

ER: It may not show up until grade one, or even high school. It is best if FASD is diagnosed before the age of six, so that supports can be put in place early. It is a medical diagnosis, and CHEO has a Genetics Department which will diagnose both children and adults with FASD. Some confirmation about prenatal consumption of alcohol is required to obtain a full diagnosis.

Y@H: Once it is determined, is there anything that can be done to halt its development in the unborn?

ER: Women who find out they are pregnant and have been drinking alcohol, should stop immediately. Any time during pregnancy that women stop drinking, they increase the chance their babies will not be affected.

Y@H: Is there a safe level of alcohol consumption during pregnancy?

ER: Researchers have been unable to establish a safe level of consumption … so the message remains: no alcohol in pregnancy, or when planning to become pregnant.

Y@H: Once a child is born with the syndrome, what is the role of your organization?

ER: My group provides information about FASD, but our main role is to support parents and caregivers, affected individuals and professionals with information and suggestions about living with FASD.

Y@H: What is being done to educate the public on the dangers of FASD?

ER: Canada now has low risk drinking guidelines which state: “Pregnant? Zero is safest.” In Ontario we have Sandy’s Law posters in all establishments where alcohol is sold and consumed. The Best Start organization has alcohol and pregnancy awareness campaigns from time to time. They are developing new resource material for teenagers. In 1999 parents in Toronto and the United States started to recognize September 9 – the ninth day of the ninth month – as International FASD Awareness Day to focus on the nine months of alcohol-free pregnancy. This event is now held around the world.

Y@H: What FASD research is going on now?

ER: CANFASD, the Canada FASD Research Network, FACE (Fetal Alcohol Canadian Epertise) and NeuroDevNet are among the organizations doing important work and making their work known. The Canadian government is funding research on updating diagnostic guidelines and investigating the prevalence of FASD in our population.

Y@H: Where can people go for help?

ER: We provide information of our meetings on the Coalition website at www.fasdottawER:ca, or call 613-737-1122 for more information, or call or visit Ottawa Public Health at 613-580-6744.

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