What can doctors do?
The Oath of Hypocrites is an entreaty to physicians to, "Above all, do no harm". In order to ensure this oath is preserved, committed physicians cautiously and compassionately advise their patients. Sometimes in order to be compassionate, a doctor will need to discuss the hard facts of a condition with a patient and in doing so will initially create distress. Should a doctor not be courageous enough to do this, a great deal of harm can be done inadvertently.
To some extent I can understand the reluctance of doctors not wishing to advance the subject of FAS to a mother. It goes without saying that many must feel that discussing this issue after the fact and especially when the mother is unaware would be counterproductive. But the doctors I spoke to were reluctant to discuss this condition with me even though I had discovered it myself, brought information to the consultations, and had obtained the contact details of experts should they wish to connect with them. Why was that?
Was this reluctance a misunderstanding of the condition and its ramifications or was it indeed sensitivity and compassion towards the person who had caused the condition? Either way it was harmful, and definitely did not help in any way. It aggravated rather than alleviated my distress and more importantly posed considerable danger to Seth until he was appropriately medicated.
On discussing this issue with medical professionals in North America, I came to the conclusion that in some cases this reluctance is a misunderstanding that foetal alcohol syndrome is the possible root cause of many other conditions. To a doctor, this misunderstanding would raise the necessity of bringing the primary cause to the attention of the parent when they may be able to deal effectively with the sequelae without the disturbance that will undoubtedly ensue following a discussion of the mother's drinking habits.
While superficially this appears to be a sensible approach given that the mother is likely to play a large part in the management of the child's condition, in my case it was singularly unhelpful. It may be thought that if the mother bears no guilt or remorse or suffers less from the grief associated with the loss of potential for her child then there is more of a chance that she will remain in recovery. And if there is no blame placed at her door by family members or society for the disability of her child, then this methodology seems to be a very positive compromise.
However the interventions and strategies at home, school, in employment and in society are very different to those associated with, say, Attention Deficit Hyperactivity Disorder (ADHD) which was diagnosed as Seth's primary condition. This is a very important lesson I learnt when I first attempted to obtain a diagnosis for my sons. At first I believed that because the doctors I visited did not seem concerned about Foetal Alcohol Syndrome, then my concern was misplaced. It was only after contact with Sue Miers from NOFASARD that I began to see just how pivotal accurate diagnosis and management was. This has been corroborated through experience many times over the last two years and outlined in this book.
As a mother who cares deeply about her children, I can say with complete confidence that while discovering that I had physically harmed my boys was a hellish time for me and one that could have destroyed me without the support of family and friends, having an explanation for Seth's idiosyncrasies was a relief. Attention Deficit Hyperactivity Disorder had never explained the other anomalous behaviours that were often bizarre and distressing, nor did Dexamphetamine assuage them in any way.
So while doctors are right in their belief that the obvious affect of diagnosing FASD in a child would be a tremendous disturbance to the family - it is a responsible disturbance, and one which they must be prepared to make. I would have given my life to know about Foetal Alcohol Syndrome before Seth was six. A diagnosis prior to aged six can mitigate some of the secondary disabilities in affected children.
If Seth had been diagnosed with FAS instead of ADHD, the secondary disabilities that had not developed at that stage might have been prevented. The knowledge may have precipitated my recovery; I could have intervened at school for him; I would have been very careful about his mental health and certainly been able to support his success at work through the services of a disability employment agency. Now I spend every moment of my life, awake and asleep, wondering whether the next call I receive will be from the police telling me he has been arrested, or from a hospital telling me I will never see my son again. And that is only my sorrow. Seth and Hayley have a horrendous challenge ahead of them just trying to live a "normal" life. And how long will Hayley, at 18, be able to cope with Seth and his undisciplined need to feed his drug and alcohol addiction, or his anger and self-destructive proclivities when life doesn't go his way? How can she possibly manage to love him and care for him under those conditions? And what will happen to Seth if she can't?
If doctors knew of the immeasurable sadness experienced by both my husband and myself knowing that our cherished and beloved son could be in a very different position, they would surely change their perceptions of the discomfort they might experience when faced with having to discuss a mother's alcohol intake. Perhaps it would make their job a little easier if they could give a mother this book and say, "Read this, and no matter what you discover about your child and yourself in its pages, I will be here to help you."
As a matter of urgency, doctors in Australia should be asking themselves whether silence has ever been an effective method of healing. Would muteness serve a cancer patient well? Would a doctor remain quiet if a patient had diabetes? Would any practitioner knowingly place a child at risk by not giving it every chance to alleviate the symptoms of its condition through correct diagnosis and management? Not usually! But when it comes to discussing alcohol with a pregnant woman or the drinking habits of a mother whose child shows quite convincing signs of FASD – yes, often, and certainly in my case!
Unfortunately there are no "right" words. There is little a medical professional can do to ease the pain for a mother, and no way to say the words that will hurt less, but they do have to be said – for the sake of the child, and, in the long term the parents.
What also has to occur is a systemic and multi disciplinary process of management, support and education that isn't widely available in Australia for FASD. However the existing services would be adequate if we had courageous doctors prepared to make a diagnosis and develop management strategies for their affected patients. The case workers, social workers, psychologists, occupational therapists, support workers and speech therapists in the existing services would assist their FASD patients by learning more about the condition in order to develop appropriate services. My second book is dedicated to these professionals.
What is said and the way it is said will depend on the mother's alcohol status viz: Is she alcoholic? If so, is she in early or late stage alcoholism? Is she just a social drinker? Does she have any information on FASD? Does she have any FASD related conditions herself? In Canada and the United States it is estimated that 50% of mothers who give birth to children with FASD, have FASD themselves.
For someone who was not fully into her addiction it may need only a confirmation from a doctor that alcohol is indeed harmful. That may be all it would take to save a child from endless pain like Seth is going through, as while it may seem obvious that full blown Foetal Alcohol Syndrome is caused only by a full blown alcoholic that is not necessarily the case. Laboratory studies suggest that a single drinking binge by a pregnant woman can damage for life the brain of her unborn child.
Whatever words the medical practitioner chooses to use, they must be followed up with support, support and more support for the mother and family.
I have tried many times to remember what was going on in my mind when I drank during my two and almost three pregnancies. I had a very early miscarriage that undoubtedly was caused by alcohol. My conclusion now is that I wasn't thinking at all. Bewilderingly I stopped smoking and took iron and folic acid. Was I reasoning that smoking would injure my baby but alcohol would not? Was I taking vitamins and minerals to improve and ensure the health of my babies but still considered that alcohol would do no harm? And what would have been the result of just one enquiry from my doctor about my drinking habits?
No matter how hard I try I cannot remember even fleetingly contemplating anything about alcohol and pregnancy – and injury. I never thought, "one drink won't hurt"; I didn't think that drinking during a particular trimester would be less harmful than at another time; I did think that the placental barrier was a very formidable force.
So I drank through both pregnancies and my family learned the hard way about FASD. Perhaps not surprisingly, finding that I caused this unintentionally is of no consolation to me nor, I believe, would it be to any mother who has felt her child move inside her and experienced the joy of holding her baby for the first time. Being a mother and hurting your baby are, for most women, mutually exclusive. But this is something I have to deal with. I would go through it all again a hundred times if necessary, if it meant that my sons could receive the assistance they need. This is not something a doctor needs to take on board to the extent where he or she believes that silence is the better option. It will never, ever be the better option with this condition.
Queries about the drinking habits of all female patients of child bearing age whether pregnant or not, should be the ambition of every doctor during any consultation. It should become a standard enquiry or educational message when discussing birth control, safe sex or preparing for pregnancy.
Every teenager should be advised as a matter of course that drinking during pregnancy is harmful. No doubt this will cause fear and consternation on the part of the patient if they are pregnant and have been drinking but it has to occur. I would have preferred to undergo the torment of wondering what harm I had done by drinking a few drinks early on, than by finding out when my children were teenagers that they had irreversible brain damage caused by drinking throughout my pregnancy.
There is another factor that is often overlooked - the subsequent birth of affected children. If Mick's paediatrician had inquired about my alcohol intake when he diagnosed Mick at 6 months of age as "possibly retarded"; Seth would not now have Foetal Alcohol Syndrome. We would have two relatively healthy children into whose future was woven the thread of peace and contentment not fear and apprehension, and I would never again have to look at my son and see his terrified eyes hiding behind a make-believe smile.