My thanks go to Sue Miers for
encouraging me to write this book and to Maggie for being a friend few of us are
lucky enough to have. Also to Dr
Sterling Clarren and Dr Yan Perumal for not only being dedicated to improving
the health and wellbeing of their patients, but for being the kind of people who
try and make life less complicated for others.
I wish to thank David Boulding who has contributed both to this book and
to my life. Thanks to Susan Doctor, Janet, Carolyn, and Tina Thornton for taking
the time to read and edit my drafts and offering their knowledge and expertise,
and lastly to my brother Noel who proofread each draft with meticulous pedanticism.
I would like to acknowledge Dr
Clarren’s kindness in not dissociating himself immediately from this book
after viewing the first draft.
My children Seth and Mick have proved to me that there is such a thing as unconditional love and that “ability” has many facets. For whatever ability I have taken from them by drinking through my pregnancies, they have found ten times that to manage the various challenges that prenatal injury has created.
I am a recovering alcoholic. The consequences of my drinking included almost losing my marriage and my life. But the most significant consequence, by far, was the birth of my two children, who were subsequently found to have Fetal Alcohol Spectrum Disorder (FASD).
When I discovered they had FASD, I believed my heart and my life would never be the same. I couldn’t comprehend how I was going to keep going, knowing what I had done to them. But by researching FASD and slowly discovering strategies to help them with their more significant health and behavioural problems, I have now acquired a certain acceptance about their condition. Along with that often fragile acceptance, though, comes the determination to evoke an understanding by Australians that FASD is just as appalling a threat to our society as it is to any nation which uses alcohol as regularly and indiscriminately as we do.
I feel immense respect and compassion for anyone who struggles with the lifelong effects of prenatal alcohol exposure. They live, and are, only sometimes, able to work in a world that often undervalues or misinterprets their best endeavours as social irresponsibility. They will forever be at the mercy of others’ expectations and will only occasionally be able to meet them. And, according to the National Organisation for Fetal Alcohol Syndrome and Related Disorders (NOFASARD), with Australia's current level of recognition of FASD, it is more likely than in any other industrialised nation in the world that this primary condition will remain undiagnosed for the remainder of their lives.
My own experience has shown me that those affected by this disorder have lives that are reactive rather than proactive. Situations will be thrust on them rather than created by them. Their days will be spent trying to make sense of what is happening to them, rather than learning from their experiences for next time. They can convince anyone who listens that their dreams will be realised, their determination and commitment unmistakable, but when they leave the room, their dreams are forgotten. Their school years consist of bullying and being bullied, not the joys of learning. They will take prisoners, thinking they have made friends. Their lives will be lived according to their peers’ desires, not their own – and they won’t know the difference. When they are punished, they don’t understand it’s because of what they did, so they don’t show remorse.
Because this disorder is minimally investigated and diagnosed, there are many people who can be found locked in the cycle of our welfare and employment systems, mental health services, drug and alcohol services, prisons, the Personal Support Programme, vocational programs, disability services and youth services. Interviews with service providers indicate that an extremely high percentage of people with the characteristics, behaviours and symptoms of FASD are floundering in the very supports that are there to help them.
I believe that our nation cannot afford to ignore the economic and social impact of FASD, particularly since research from Canada and the United States shows that people with FASD can cost the government upwards of $1.5m1 dollars throughout their lives in services and welfare benefits they access. Most people affected by FASD will be a welfare recipient at some stage of their lives, if not for the whole of their lives - there are 2.7 million people of working age on income support from the government and 700,000 people on Disability Support Pension in Australia2.
We must all be agents for “responsible disturbance” in our community and end the sacred cow of silence about FASD. The community must be educated about the dangers of drinking while pregnant, and identification and support must be provided to the people currently in our society who are affected.
Unlike those with an obvious disability such as Down’s syndrome, which inspires compassion and understanding, a person with FASD is often viewed as delinquent, antisocial, selfish or manipulative.
It has been known for many years that drinking alcohol during pregnancy can cause birth defects. However, even with this knowledge, Fetal Alcohol Syndrome is the number one cause of mental retardation in the United States today (I am quoting North American statistics only because there are none in Australia as yet). There seems little agreement regarding what level of alcohol consumption during pregnancy causes damage to the fetus. Doctors across Australia are therefore not giving a consistent message and some pregnant women are never questioned by their doctors about their alcohol consumption prior to and during pregnancy and lactation.
If you are a parent or caregiver of a child with FASD, you have undoubtedly faced many challenges. It is my fervent hope that this book will complement the extraordinary work Sue Miers and the Committee Members of the National Organisation for Fetal Alcohol Syndrome and Related Disorders are doing to improve the situation for parents, caregivers and sufferers of FASD in Australia.
In this book, I have been as honest as my memory will allow. Some of my thoughts and recollections have taken me by surprise and caused me to reassess my integrity and character. The results of this analysis, while stressful and unpleasant at the time, have ultimately unburdened me of some measure of shame. I hope that readers who are birth mothers will find similar relief knowing that we are not alone, and although we would give our lives for our children to be whole - ultimately we will be able to say with real conviction, “We did the best we could.”
I read this book in one sitting, some of it out loud to my wife, perhaps seeking company in its sorrow. It is the story of the pain of addiction, of trying to raise deeply troubled children, of trying to find help and, finally, of trying to warn an ignorant and even uninterested world. At the beginning, I felt I was being drawn down into an experience of human suffering that doctors are supposed to get used to, but would leave me burdened. Its thoughts certainly remained in my mind, but it took a day to realise that I was not depressed, rather, inspired!
This is an inspiring book. I was inspired by the display of a mother’s unquenchable love. I was inspired by a revelation of honesty for which I know few peers. I was inspired by a commitment to refuse to succumb to defeat, but to struggle in the other direction, though the way was obscure.
It is a mother’s story, but in the background is a father and a husband, whose silhouette causes you to wonder: from what source does he find such constancy, such patience, such enduring love?
To be sure, the book is a story of a human weakness - alcoholism - but the lasting message is of strength.
It is not only Elizabeth and her family who need that strength; our society needs it to confront the damage that is being done to those waiting to be born. Alcohol consumption is increasing in young women, as the voices of constraint are subsumed by the glitz of advertising and the unrelenting pressure of peers. What on earth should be done by those of us who know something of the effect of alcohol on the developing brain, be it fetal or adolescent?
The skills of neonatal intensive care are steadily increasing, reflecting the time, effort and money invested by government and professions. As a result, younger and sicker babies are surviving, but nothing can be done to restore the prenatal damage from alcohol and tobacco. Society goes to the greatest of lengths to ensure that the brains of sick babies are protected after birth, but does little to avoid the preventable damage of alcohol before birth. This is an anomaly.
It is also an abrogation of the promises we have made. Being signatory to the United Nations Convention on the Rights of the Child, our country promised it would undertake all ‘appropriate legislative, administrative and other’ measures to ensure the wellbeing of the child ‘before as well as after birth’. We are not that committed, and the potential of unborn generations is being stolen.
What can we do? We need to make legislative changes to reduce the access of young people to alcohol, we need to administer those laws, while increasing our programmes of education. One contribution to education would be for people to read this book.
a personal note, what can a neonatologist do? Frankly, I have always avoided
declaring to a mother that her baby has apparently been damaged by things she
did during the pregnancy. I have thought to spare her additional pain. Elizabeth
would have me wrong.
FOREWORD by Professor Carol Bower, Principal Research
Fellow, Division of Population Sciences and Clinical Professor, Centre for Child
Health Research, and School of Population Health, The University of Western
Australia Telethon Institute for Child Health Research.
In the past, and to our shame, little attention has been paid to fetal alcohol syndrome in Australia. Fortunately for affected children and their families, the unstinting work of people like Elizabeth Russell and Sue Miers has awakened interest in this completely preventable disorder. I have no doubt that the publication of this book will open many more eyes, with its honest and confronting description of the devastating effects that FASD can have on children with the condition and their families, and of the ignorance of professionals and the community.
Elizabeth says that writing the book has unburdened her of some measure of shame and that she hopes that readers who are birth mothers of children with FASD will find similar relief, knowing that they are not alone. These are valuable outcomes indeed. However, I think the value of the book is even greater. In describing the far-reaching and disruptive consequences of FASD, Elizabeth’s very personal account raises awareness of the condition in a way that reading a clinical description can never do. Further, I am confident that increased awareness and understanding will surely, if slowly, lead to improving the lot of children and adults with FAS.
and understanding are also important precursors to prevention, but prevention
may take even longer and will be difficult. Difficulty, though, is no excuse to
shirk from the task. As a first step, information on the effects of alcohol in
pregnancy and FASD should be readily available to health professionals and
women. Elizabeth acknowledges that she may have been so caught up in her
alcoholism that she may not have been able to stop drinking for nine months, but
she also believes that had she known about the damage alcohol could cause it may
have been enough for her to stop drinking. Surely we owe our children that
other professionals and interested people
Sterling K. Clarren, MD, FAAP Robert A. Aldrich
Professor of Pediatrics University of Washington School of Medicine. Clinical
Professor of Pediatrics University of British Columbia Faculty of Medicine,
Chief Executive Officer Canada Northwest FASD Research Network
Fetal Alcohol Syndrome came to public attention in the early 1970s and is now recognised as a major health problem. Hundreds of books, tens of thousands of research and scholarly articles and untold public health reports have been generated in the last thirty years. Yet one voice has been mostly silent, the voice of the birth mothers themselves. While it is a simple assumption to say that these women must feel shame and guilt, I know from personal experience with hundreds of them that none meant to harm their children. Their world is a complex place of addiction, abuse and mental health disorders and inadequate, incomplete and inappropriate care. Elizabeth Russell opens the door to that world. This is a must-read.
Elizabeth Jane Elliott, Associate
Professor, Discipline of Paediatrics and Child Health, University of Sydney
Consultant Paediatrician, Children's Hospital at Westmead, Director, Australian
Paediatric Surveillance Unit
This unique and insightful book highlights the impact of FASD on the parents and families of affected children. It describes the highs and lows of dealing with the diagnosis and the secondary behavioural and learning problems experienced by children with FASD. The story also gives courage and hope to carers and parents of young people facing the challenge of a life with FAS. The personal perspective given by Elizabeth Russell is particularly valuable for mothers, who often bear both the brunt of the guilt associated with this diagnosis and the burden of care. It will also help professionals who deal with these children, often without really understanding the effect of a delayed diagnosis or the day-to-day implications of the condition. I would strongly recommend this brave account to parents, carers, teachers and health professionals alike.
Lorian Hayes BAppHsc (IPHC) Hons,
MAE FASD Educator/ Trainer/ Apunipima Cape York Health Council Indigenous
spokesperson for NOFASARD
results from my research suggest that a high proportion of indigenous mothers
drink heavily during pregnancy. This behaviour has an adverse effect on the
physical and psychological development of the newborn and the five-year-old
child. Efforts to improve indigenous children’s health should start by
addressing the mother’s social, emotional and physical wellbeing.
is well documented that over-use of alcohol has a significant impact on the
health of both the Indigenous Australian as well as the non-indigenous
Australian. From birth to death, alcohol use plays a pervasive role in the life
cycle of many aboriginal people. The abuse of alcohol is a pervasive and
pernicious problem. It is one of the most prevalent psychiatric disorders
according to general epidemiological surveys. The consequences of this
prevalence are difficult to escape within the context of individual lives. This
remains the case whether an individual actually drinks or not. Even the unborn
fetus is affected, as maternal alcohol can cause serious health problems even
before birth (annals of the New York Academy of Sciences, 1989). Consequently,
from the viewpoint of health, there is a significant risk attached to the
relationship between alcohol and pregnancy.
a result of my studies into maternal alcohol consumption, 92% of women who
attended an antenatal clinic in a twelve-month period drank alcohol at hazardous
and harmful levels and 100% of the women used marijuana, with 17% using other
substances. After the analysis of data which has been collected during 1981-1983
from a large study that was undertaken in South East Queensland, it was found
that 43% of indigenous women drank during their pregnancy, with 34% being heavy
drinkers. It shows that women who drank had more than 3 times the risk of having
a low birth weight (<2500g) baby. Children of mothers who were heavy drinkers
during pregnancy showed significantly higher scores in behavioural problems at
five years of age compared to children of mothers who did not drink.
studies do not differentiate between prenatal, perinatal and postnatal maternal
alcohol consumption. Research addressing drinking and drinking problems in
mothers has remained a relatively neglected area. I would strongly recommend
that further studies addressing maternal alcohol consumption, especially during
the antenatal period, be undertaken with the understanding that one cannot
separate the drinking behaviour from the drinking environment. A holistic
approach must be taken that involves treating the person as a whole and not just
treating the illness alone. Prevalence rates of alcohol related illnesses
indicate that in spite of many programs that tried to address this issue,
indigenous women continue to drink during pregnancy (Hayes L unpublished thesis
1998, Children of the Grog).
What Elizabeth has achieved throughout her writings is heart wrenching. Society needs to confront this devastating condition as the damage to our children is lifelong. It is not just an issue for the mother who drinks, but for society as a whole. It is a family issue as well as a community issue. We all tend to ignore the picture of a pregnant woman drinking alcohol and have this belief system that it is okay to drink. It has become the Australian way to ‘go on, have a drink, it won’t hurt you’, we now know differently. I have many children in my own immediate family who have been exposed to alcohol in utero and I am very concerned about what is going to happen to them throughout their life’s journey. A colleague, Dr Jan Hammill, and I have been tirelessly challenging the system to assist these children who have FASD, especially the children who have ended up in the criminal justice system.
Susan Doctor PhD, United States of America
FASD is a problem that reaches all corners of the Earth – where there is a love affair with alcohol, there is FASD. Unfortunately, it is also a problem that is misunderstood, and often perpetuated by ignorance and denial.
This is an important book that offers the reader a candid story of one family’s struggle to address maternal alcoholism and prenatal exposure to alcohol. The reader receives the gift of an inside view of the layered complexities of addiction, FASD, limited resources, and policy issues that surface as the struggle to adequately address FASD magnifies the imperatives. Hopefully, one of the outcomes inspired by this book will be policy makers accepting the responsibility of the provision of services for the alcoholic, those with FASD, as well as the professionals and care-givers impacted by the growing number of individuals with FASD.
David Boulding – Canadian Lawyer
When you have worked as a lawyer in family and criminal courts, as I have for over fifteen years, you hear many stories. This story, this author, is separated from almost all of the stories I have heard by two special human qualities: she takes responsibility for her life, and then decides to take action herself to remedy the situation. This is indeed a story worth reading.
The story contained here is not unique in the facts - as you will learn, the facts are all too depressingly repeated over and over all around the world. You will learn more about Fetal Alcohol Spectrum Disorder here than in any medical text book - and that is part of the problem the author seeks to remedy. The book details vital information each Australian considering having a family must have - information they will not get from doctors, parents or the media. More importantly, here is a story of mother taking responsibility for her life and her most difficult situation, and then doing something constructive to help others. The acceptance of personal responsibility and the commitment to action found in these pages makes this story so vitally applicable to each reader. FASD affects all aspects of Australian society ... no one is immune. You will learn this medical/social problem is 100% preventable.
True friends will tell you when you have acted in a manner that is unacceptable. True friends will tell you when a wrong needs to be righted. They will tell you if you are an alcoholic and damaging the lives of your family ... this ‘friendly’ message may not be easy to accept, but it is of huge importance to all Australians. Denial is a natural response to living under pressure. Taking responsibility for living is hard work ... ask anyone who works in a courthouse or hospital. And I believe only special friends have the courage to tell you about the personal effects of FASD ... and then tell you how to help make the ‘wrong’ a ‘right’.
Sue Miers, Spokesperson for the National Organisation
for Fetal Alcohol Syndrome and Related Disorders
Alcohol and Pregnancy – A Mother’s Responsible Disturbance is a very special and poignant book. Elizabeth Russell has shown tremendous strength and courage in sharing her story and personal experiences to help bring greater understanding and awareness of the devastating effects of alcohol on the unborn child.
Her message to the medical profession must be heeded because it comes from one who has experienced the devastating effects of both their failure to provide her with adequate, accurate information about alcohol use in pregnancy and their failure to accurately diagnose the effects her alcohol use had on her two sons.
the following strategies should be implemented immediately by Australian health authorities:
Physicians and all other health practitioners who work with women prior to and
during pregnancy should receive training related to assessing and influencing
alcohol use in pregnancy. High risk groups require a specialised approach and should
be identified, assessed and supported to stop or reduce their drinking for the
duration of their pregnancy.
A widespread and multifaceted community awareness and education program
that has sufficient information to allow women to make informed choices
about drinking during pregnancy. Such a program should also include psycho-social
support for women who have been drinking during their pregnancy.
3. Diagnosis and management of FAS and related conditions requires a multidisciplinary approach - there should be a fully trained diagnostic team at each major teaching hospital in Australia who are then able to train other teams as needed in the diagnosis and management of the condition.
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