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False and Highly Questionable Allegations of Munchausen Syndrome by Proxy
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FALSE AND HIGHLY QUESTIONABLE ALLEGATIONS OF MUNCHAUSEN SYNDROME BY PROXY
presented by Dr Helen Hayward-Brown.
This paper was written in 1999 and presented to the 7th Australasian Child Abuse and Neglect Conference in Perth.
CLICK HERE to download a text copy of this paper.
"Primum non nocere" ("Above All, do no harm")
I am a medical anthropologist and my doctoral research, is concerned with the experiences of parents of children with chronic illness where there have been difficulties with diagnosis. In the course of my work, I discovered that many of these parents had been accused of Munchausen Syndrome by Proxy (MSBP). Briefly, MSBP purportedly involves a mother deliberately making her child sick. In other words, these mothers were blamed for their child’s chronic illness. These MSBP allegations were later proven to be false, appeared to be false, or at the very least were highly questionable. What then, does a "diagnosis" of MSBP actually mean? What processes are involved in a "diagnosis"? I shall present the experiences of these mothers who have been accused of MSBP, underlining the ramifications of these accusations for the families involved. Accusations follow a "pathway of suspicion" or may result from confusion over medical management. In both cases, there is apparent "certainty" on the part of professionals about the diagnosis. I shall question this medical certainty and the scientific validity of MSBP, and in doing so, consider what a "false"diagnosis may actually mean. Underlining my discussion is a sub-theme - the social construction of the MSBP diagnosis by medical culture. Is MSBP a fabrication itself? Perhaps we should consider why the diagnosis of MSBP has arisen in this context of chronic illness and why women, rather than men, have been accused. Once accused, how and why do women resist their diagnosis? What happens to these women? The strength of these women’s resistance is a primary focus of my paper. I hope to show that a "false diagnosis" of MSBP should be avoided at all costs.
THE PARENTS IN MY INTERVIEWS
To date, I have engaged in thirty one indepth interviews of parents (mothers and a few fathers) of children with chronic illness where there have been difficulties with diagnosis. Of these thirty one parents, nine were accused or definitively suspected of MSBP. However, a further five were either referred to psychiatrists or were very clearly suspected of MSBP, although this had not been confirmed by reference to hospital files. This means that approximately fourteen out of the thirty one parents, nearly half the parents interviewed, were clearly suspected or accused of MSBP. Having made this statement, it should be viewed with some caution and should not be interpreted simplistically, because the collection of my data was a complex process. I did not initially search for parents accused, or falsely accused of MSBP. In fact, I was almost entirely unfamiliar with the concept when I began my research. The involvement with accusations of MSBP was therefore a process which evolved during the course of my study, as I discovered parents who appeared to have been "falsely" accused of the syndrome. It should be noted at this juncture that my research work is qualitative, primarily concerned with the experiences of these parents, rather than quantitative outcomes. Any tables used are for the express purpose of furthering an understanding of these parental experiences.
Where did I find the parents to interview? This was mainly a process of "self-selection". I made contact with parents through local media, organisations such as AWCH (Association for the Welfare of Children’s Health), and AHMF (Alison Hunter Memorial Foundation), "snowballing" and the Internet. As I realised that MSBP was an issue, I made contact with the M.A.M.A. (Mothers Against Munchausen by Proxy Allegations) website which originates in the United States. Over time, the M.A.M.A website gave me access to mothers accused in Australia. This interest in MSBP parents did not deter me from making further interviews with other parents. In this way, further cases came to light, even though I had not actively sought them out. At this stage it was tempting to exclude parents who had not been accused of MSBP, however I concluded that MSBP allegations may be the"extreme" end of a spectrum of experiences faced by parents and children in these situations.
These indepth interviews or"narratives" were undertaken in different States of Australia. However, in order to gain an international perspective and a deeper understanding of MSBP issues I utilised telephone, email or personal discussions with another eighteen parents in Australia, New Zealand, the United States and the United Kingdom. Of these eighteen parents, fifteen had been accused or suspected of MSBP. These contacts were not superficial, but involved intense discussion, often on numerous occasions. Since the MSBP "diagnosis" had gained momentum earlier overseas than it had in Australia, due to protagonists in the U.S. and U.K., these contacts became invaluable.
What concerned the parents about the process of the diagnosis of MSBP? Most parents showed me evidence of flawed methodology. Parents spoke about (and usually provided supporting documentation) of such difficulties as: exclusion of documentation which supported their innocence, tampering with files, fabrication of evidence, hearsay evidence in court, intimidation, blackmail, inaccurate medical summaries, factual error, misinterpretation of behaviour, cruelty to the child involved, withdrawal of treatment, hospital medical errors and mismanagement, lack of knowledge of overseas expertise or lack of expertise in the relevant specialty, and attribution of father’s comments to the mother. It must be emphasised that these difficulties formed patterns - the same problems appeared repeatedly in the interviews and discussions I conducted. It became increasingly clear that these allegations of MSBP were "false" or at the very least, highly questionable.
Considering the difficulties these parents experienced in the process of their "diagnosis", it is pertinent at this point to look at the procedural outcomes for the nine parents who had documented evidence of the MSBP accusation or suspicion.
There were complex reasons for the different outcomes for these mothers. The parents who did not face any further action were "protected" by committed and extremely supportive paediatricians in two instances and by an officer of an investigative body in the third. In other words, it is the "stories" behind these outcomes, rather than the figures themselves, which are significant.
How are such difficulties created for these parents? What types of illnesses do their children display? Table 2 below shows the spectrum of illnesses based on both the indepth interviews and the additional discussions I held. Some parents had more than one child who were seen to be "at risk" and the illnesses of some children overlapped categories. It should be noted that this categorisation is in many senses "very loose". I found during my research that many of the children’s difficulties were linked to each other. For example, severe reflux and "gastro" problems could be found with the Chronic Fatigue Syndrome children and those with immune problems. As my interviewing progressed, it was alarming to note that many of the parents had children who had been extremely premature. These children therefore started their lives with difficulties, and parents complained that they were not supported, but rather criticised and blamed for the children’s problems. The Yvonne Eldridge case in the U.S. is an example of a mother being accused of MSBP when the foster babies in her care had clearly been shown to suffer from prematurity and/or substance addiction (Allison and Roberts 1998
Work by Barbara Bryan (NCADRC: National Child Abuse Defense and Resource Center, Ohio) highlights many illnesses which are misdiagnosed as MSBP or child abuse. Videos of Expert Witnesses are provided by this centre to educate professionals and include the following: Dr. Piero Rinaldo, medical geneticist on IEMs, includes false "poisoning" and "suffocation" material; Dr. Ian Turnbull, paediatric neuroradiologist who illustrates disease and genetic alternatives for apparent presentations of injury, especially to the head; Dr. Colin Paterson, who looks at genetic and dietary explanations for "brittle bone" disease and explains how spiral fracture may not always be indicative of non-accidental injury; Dr Marvin Miller on "temporary brittle bone" from which a baby may recover, Dr. Ayub Ommaya and "shaken baby syndrome". In Australia, Dr. Vera Scheibner, retired research scientist with a doctorate in Natural Sciences, who acts as an expert witness in court, indicates that many parents are being falsely accused of MSBP or "shaken baby syndrome". She states emphatically that the children may actually be suffering from the ill-effects of immunisation.
What are the ramifications of false accusations of MSBP? I refer to these as the "embodied consequences"(Hayward-Brown 1998) as they involve the day-to-day facts, underlined by the phenomenological "lived experienced", which involves bodily and emotional reactions to distress. One immediately clear consequence is the death or serious illness of the child when it is removed from its parents. Aligned to this is the maternal and familial deprivation which occurs as a result, perhaps involving wrongful imprisonment of the mother. Fear, anxiety, anger and distress were common long-term inheritances of these painful experiences. One mother I interviewed attempted suicide on two occasions. When a mother is suspected of MSBP she is immediately isolated, and support is withdrawn. As soon as she is suspected she will be treated as guilty and treatment of her child usually ceases. Even if a child is only suspected of being "at risk" it may be removed from its parents. Additionally, a mother may become too terrified to take her child to the doctor, for fear of being seen as over-protective or over-utilising hospital services. Doctors use a "snowball" effect to inform each other of the mother’s "problem". Even if the mother is proved innocent, it is too late to restore damage to her reputation. I refer to this as the "closed circuit of doctors". If a doctor speaks out in favour of a mother, he/she risks conflict with his/her medical colleagues. Clearly, a final consequence for many families is their involvement in protracted court cases in an attempt to keep their children or clear their name, if their child has not already died. This usually involves great financial and emotional distress. For all parents, the final embodied consequence is the sense of betrayal which remains.
I would now like to present a case study, which illustrates the difficulties parents may face when they are accused or suspected of MSBP. I shall call this story "Heather’s story" although the data has been confounded to protect the identity of those involved. In essence, this story is the compilation of a number of stories from different mothers. The story has been carefully woven together, so that the credibility of the experiences are not affected in any way. Let us say that Heather’s daughter suffered severe reflux and "gastro" problems. The story outlines confusion and conflict over medical management and diagnosis. I could easily have chosen an example where allegations have been definitively proven to be false, as in the case of Lorraine, whose son who was later diagnosed with a chromosomal disorder (Hayward-Brown 1998). However, I have deliberately chosen an example where the medical issues are more complex, because it is these situations which often result in "false" allegations. The parent narratives I heard, with supporting documentation, told a completely different story to the "official" medical one. Baldwin (1999) refers to the medical narrative as the "metanarrative", where a "tactic of narrative privilege" occurs in relation to parent narrative. Blakemore-Brown (20/20 video n.d.) also states that because these parents’ stories are viewed as "lies", they are never believed. My case study is by necessity a lengthy one, because I believe that often, although not always, it is the details of these cases that are significant in gaining a full understanding of a situation. I would argue that case studies in the medical literature are often rudimentary.
HEATHER’S STORY"IN LUNA PARK: JACK IN THE BOX FILES AND THE EMOTIONAL ROLLERCOASTER"
Heather is determined to fight what she regards as an issue of immense injustice in relation to allegations of MSBP. I first discovered Heather’s predicament through the M.A.M.A. website in the United States. Over time I found three more mothers who had suffered similar difficulties with the same doctors. Some of these mothers spoke about other parents who they believed had also been accused. Heather was initially concerned about whether or not she could trust me. In fact, I had email contact with Heather over a number of weeks before she had the courage to give me her name or any personal details. She has four children and comes from an Israeli migrant background. We first met in her home in a remote rural settlement in Victoria. Sitting together on the lounge, we ploughed our way though her paperwork. Heather has a background in the health professions, (unfortunately one of the "symptoms" in the profile of the MSBP mother), and this knowledge gave her a good understanding of medical mismanagement issues. Her narrative was peppered with references to the medical literature to support her claims. She has been meticulous in her documentation.
Where does Heather’s story start? It starts, in fact, with her own medical history. She suffers from auto-immune disease and had difficulties with her pregnancy. To avoid early labour she received treatment with a battery of appropriate drugs . She gave birth spontaneously, but prematurely. A few hours later her child went into respiratory distress, would not suck and was severely hypoglycaemic. The child was put on a drip for ten days and was tube-fed. Heather herself suffered a slight stroke as a result of the birth.
How did the child progress? There was some difficulty with weight gain and at about 4 months of age she developed what Heather described as a "weird rash" on her face, buttocks and groin, which was finally attributed to temporary zinc deficiency, after initial misdiagnosis. Her symptoms included reflux, vomiting and gagging on feeds. At six months of age the baby was admitted to the local hospital for tests. These included a barium swallow and a pH probe which revealed 60% reflux. The difficulties continued, including one apnoeic episode. Heather complained to me that the specialist who took over the treatment did not use "conservative" techniques to control the reflux. Instead, Heather told me that the specialist "medicalised treatment", instigating naso-gastric feeds and drug treatment with Cisapride.
Attempts at feeding by mouth were difficult, since by 11 months of age the child had been continuously tube fed for three months. Heather alleged that her specialist refused to co-operate with the speech therapist or dietitian. The episode of apnoea meant that Heather and Unwin were referred to a surgeon for a fundoplication1. They indicated that they were not told that this fundoplication could result in "dumping syndrome". "Dumping syndrome" results from gastric surgery and is due to rapid transit of food from the stomach into the small bowel. Additionally, tests such as manometry2 which would have highlighted her daughter’s bowel motility disorder were not performed3.
Heather stated in her complaint to the investigative body that they specifically told the registrar that they did not wish to have a 360 degree fundoplication. They made this request after seeing the results of other children in the ward. This request was ignored and a 360 degree fundoplication, rather than a three-quarter, was performed, Heather once again referred to the medical literature4 and also stated that the vagus nerve was damaged during the operation, which may increase the likelihood of "dumping syndrome"5.
What transpired after the operation? Their daughter experienced lethargy after eating, blank staring eyes, floppiness, had a tendency to sleep and would become unconscious, suffered severe diarrhoea, dry retching, and an aversion to eating food since it produced abdominal pain. These symptoms are all symptoms of dumping syndrome, yet dumping syndrome was not diagnosed for 9 months. Additionally, when diagnosed, Heather said that she was told that this was a very rare complication, despite medical literature which states that such a syndrome may develop after Nissen fundoplication6 and that it is the most common cause of morbidity after gastric surgery7 with 25-50% of all patients undergoing gastric surgery suffering some symptom of dumping.
Unfortunately, according to Heather, their specialist decided to insert a gastrostomy tube8. Heather and Unwin objected to this operation as they had seen the results of such procedures. She referred me to medical literature of the time which states that dumping syndrome can be worsened by the insertion of a gastrostomy tube if the tube is wrongly inserted9. Heather alleged that the specialist threatened them and stated that if they did not consent to this operation he would notify the Department of Social Services. Heather spoke about her experiences at this time:
The specialist’s response to the child’s deteriorating condition was to insert a naso-jejunal tube11. Heather once again pointed to medical literature12 which shows that such insertion would be contraindicated, since there is duodenal feedback inhibition of gastric emptying after bypass of the duodenum with gastro-jejunostomy tube. The child’s dumping syndrome worsened.
Furious about what they saw as medical mismanagement, Heather and Unwin consulted with another specialist at the same hospital, who instigated a diet for their daughter. After removal of the gastrostomy tube, they were now expected to feed their daughter, despite the fact that she had not effectively eaten any solid food for three years. According to Heather, this new specialist insisted that the child did not have dumping syndrome, later contradicting himself and saying that he knew nothing about dumping syndrome. Heather and Unwin now requested a full review of their daughter’s care over the previous years. They also wished to instigate a further review by a specialist at another hospital. She stated:
Experiences from the original hospital continued to "haunt" her and confuse issues. For example, Heather spoke about endocrine tests which were undertaken. She showed me copies of the results of these tests which showed abnormality. She commented:
Heather was also accused of removing her daughter’s tube. She commented:
Over a number of months Heather became increasingly worried about the care her daughter was receiving at the new hospital. She became concerned that documents from the original hospital, stating that she was suspected of MSBP, had been forwarded to the new hospital. This was confirmed when a doctor would not giver her daughter treatment, "in case she had Munchausen’s". She was amazed by these views, particularly in the light of her daughter’s recent weight gain when the new diet was instigated (see chart). Heather felt that her child had been left without adequate hospital treatment, and she could only rely on her local GP, who had always been fully supportive but felt increasingly under threat. At this time Heather told me that her GP and an officer of the investigative body both verified and confirmed that the medical history from the original hospital was inaccurate, "falsified" and misleading.
However, Heather was feeling a lot safer because she had received and signed the list of questions which were to form the basis of an investigation into her diagnosis of MSBP:
Heather made it clear to me that nobody would take responsibility for her situation. She spoke about how investigative bodies and departments "bounced" her backwards and forwards. During this time, her file at community services was open, shut and suspended like a jack in the box. She made the following comment:
As can be seen, Heather’s story raises many issues about the diagnosis of MSBP. Definitions of the "diagnosis" vary widely and are hotly debated in the medical literature. My research showed that other labels were often used in conjunction with the MSBP diagnosis, or as similar alternatives, some directed at the parents, and some directed at the child. These labels include: somatisation disorder, abnormal illness behaviour, folie a deux, pervasive refusal syndrome and hysteria. For example, Donald and Jureidini (1996) state that somatoform disorder will "raise the index of suspicion for MSBP". These "illnesses" are seen by the medical profession to be the result of "over-protective" or "helicopter" (Feldman and Ford 1994:152) parents. This is the driving force behind the "diagnosis". I argue elsewhere (Hayward-Brown 1998) that this emphasis on the "over-protective" parent has arisen from psychology’s emphasis on the development of an individual identity, rather than a phenomenological understanding such as that put forward by Merleau-Ponty (1962/1964), who suggests that when love is concerned, identities may merge.
Should the diagnosis of MSBP be used at all? Of concern is the fact that some practitioners suggest that "exaggerating" a child’s symptoms is all that is needed for a MSBP diagnosis. Whilst it is clear that some parents do harm their children, it may be more prudent to follow Morley’s (1995:529) suggestion that the MSBP label be discarded. He suggests that a practitioner should simply indicate what he feels may be occurring - if it is poisoning or suffocation, call it that. Nevertheless, there are potential difficulties with this procedure also. For example, Bryan (pers. comm) suggests that many IEMS (inborn errors of metabolism) present as suffocation or poisoning. Additionally, this may change the way a mother may be viewed by the law, for example, in relation to murder vs. manslaughter.
Paediatric versus Psychiatric "Diagnosis" and Links with "Diagnosis by Immaculate Perception"14
Meadow was the first practitioner, in 1977, to use the term "Munchausen Syndrome by Proxy". For medical professionals such as Meadow and Southall in the UK, the "diagnosis" of MSBP is a "paediatric" one. MSBP is therefore often interpreted as "child abuse" and a psychiatric diagnosis of the mother is given low priority. But how can we consider the child’s condition, without reference to the mother’s behaviour? Unfortunately the emphasis on the child leads to "diagnoses" where the mother may not be interviewed. It also leads to diagnoses which may exclude genetic and other factors.
In the U.S., the "diagnosis" is seen as a psychiatric one, led by practitioners such as Schreier and Feldman. The mother is diagnosed with a mental illness. According to Schreier (1993) the mother wishes to gain attention from her doctor (1993). According to Rand and Feldman (1999), the mother wishes to experience the rewards of "the sick role". For Donald and Jureidini (1996) the mother continues a "pathologic relationship" with the medical profession. Despite the focus on the mother, interviews may still not be conducted with the mother. For example, Schreier testified in the Storck case that it was not important to interview Mrs. Storck [He offered that such an interview would have served no useful clinical purpose since he] cannot discern from parent interviews who is telling the truth and who is not" (Bergeron 1996).
The medical profession have moved to change the label a number of times, for example to factitious disorder by proxy, and this further complicates issues. In Australia the diagnosis "flits" from the paediatric to the psychiatric. If a parent receives a psychiatric report refuting MSBP, then this report is deemed "irrelevant" - the diagnosis "turns" into a paediatric one, despite the fact that the psychiatrist’s report was requested by the doctors in the first place. This occurred with Rebecca and Charles. As an example of confusion with the "psychiatric" versus "paediatric, I refer to a paediatric psychiatrist’s evidence in court which I attended. This practitioner referred to Meadow and the fact that the diagnosis was a paediatric one. His evidence centred on the child and the foster mother who was given glowing reports. However, at the end of his evidence he made the following statement, directed at the accused mother: "Other people may see your composure in court as a strength, but I see it as further evidence of your disassociation". Clearly, a psychiatric evaluation of the mother, yet he had never consulted with her and had only seen her on one previous occasion in court. He had never spoken with her.
The issue of consultation is a critical one. Two of the mothers I interviewed, Narelle and Fiona, were "diagnosed" by email/mail. Fiona was initially diagnosed in this way, despite the fact that the evidence of her psychiatrist, pointing clearly to her innocence, was removed from the documents when they were first sent for "overseas expert opinion". Many of the parents I interviewed referred to the fact that diagnoses were made without the practitioner meeting them, and in some cases, their children. This is such a common practice that it is now referred to by activists as "diagnosis by immaculate perception"or "Munchausen Syndrome by Proxy by Proxy". Despite the fact that the American Medical Association has recently condemned prescribing of medication over the Internet, without face to face consultation, similar practices with MSBP continue. It may be related to assertions such as those made by Donald and Jureidini (1996) that medical practitioners who have had long-term involvement with families are deceived by these mothers, and are therefore "colluding" with them. They suggest that these medical professionals are guilty of generating and maintaining MSBP. A number of parents also asserted that community services had opened a file on them, yet they had never met with the family. Morley (1995:529) shows concern about lack of thorough medical consultation with the mother in these cases, who are then confronted with a MSBP allegation. He refers to this behaviour as "indefensible".
Is the MSBP Diagnosis Scientifically Valid?
The MSBP "diagnosis" is a "research" diagnosis only. It is not a definitive category in the DSM IV (1994 ref), only appearing in the appendix. It is a recent and extremely controversial diagnosis (Allison and Roberts 1998).
The lack of scientific credibility of the diagnosis can be seen by recent court outcomes in the United States. A number of courts have ruled that the use of the MSBP diagnosis is not admissible in court. These include Martinez v. United States of America, State v. Lumbrera, and Commonwealth v. Robinson. Presently, in the matter of the State of Florida v Kathleen Bush, the same argument is being put forward. In fact, it is argued in these submissions that MSBP, since it is an "emotional topic" is "unfairly prejudicial". For example, medical professionals may refer to their experiences with previous children’s deaths and use "melodramatic" evidence of "death rates", based on statistics which are debated in the literature, but presented in evidence as "fact". Baldwin (1999) would argue that such "statistics" are socially constructed into "facts".
It is argued in these cases that expert testimony in relation to MSBP is unreliable. I am not a lawyer, and would be extremely wary about making more than brief remarks about such issues. I can only outline what I have gleaned from documents tendered to courts. These documents state that according to the US Federal Rule of Evidence 702, the presentation of "expert testimony" should be on the basis of "scientific, technical or other specialised knowledge". It is further argued that an expert testimony must "rest on a reliable foundation", (according to Daubert v Merrell Dow Pharm Inc.) and therefore MSBP cannot be covered by this criteria. Daubert provides a five factor non-exclusive test: 1: whether the expert’s theory can be or has been tested, 2: whether the theory has been subject to peer review and publication 3: the known or potential rate of error of a technique or theory, 4: the existence and maintenance of standards and controls and 5: the degree to which the technique or theory has been generally accepted. In Australia The Rules of Evidence Act is extremely complex. I can only comment that it appears that the probative value of expert testimony (and the MSBP label) must be weighed against the prejudicial effect.
It is the issue of profiling which I argue is extremely prejudicial and inaccurate. It also lacks scientific validity. The M.A.M.A. website lists the "characteristics" which supposedly "alert" a medical practitioner to MSBP and which comprise the "profile" of a MSBP parent. This "profile" and list of MSBP indicators is being used by medical practitioners to hastily condemn women. For example, Jureidini (1996) and Feldman and Ford (1994) suggest that it is best to act quickly, gathering evidence later. The list provided in 3 table below is not exhaustive. For further details, refer to Baldwin (1996) where the paradoxical nature of these lists is highlighted. For example, over-concern, but also lack of concern, overly co-operative behaviour with medics, versus non-compliance with medics, confession versus denial. Of particular concern for Morley (1995) is the fact that doctors engage in "blackmail". Mothers are told that they have to confess to MSBP or they are unlikely to have their children back. Mart (1999) also raises the notion of the "anti-profile". He asserts that the opposite of the behaviours listed would be far more abnormal than the profile behaviours. Similarly, Allison and Roberts (1998) raise issues of concern about the use of "syndrome" in "psychological" diagnoses. They (1998:140) point out that the medicopsychiatric definition of syndrome is far too broad and "given to a considerable amount of vagueness", based on a "cluster of symptoms".
I would argue that the "existence" and "reality" of MSBP has been "constructed" in the medical literature. Literature is often based on secondary rather than primary evidence, (as in the case of Rosenberg 1987) or it relies heavily on previous papers. Allison and Roberts (1998) refer to the "recursivity" of the literature, indicating that if enough papers speak about the existence of MSBP, then it is seen by the medical profession to be a reality. Additionally, the medical literature may include mistakes. For example, certain "expert" papers have been shown to include parents (as guilty of MSBP) who were"cleared" of MSBP before the papers were published. The epidemiology or statistics based on these papers would therefore be flawed. Also constructed is the persona of mothers as "dangerous" - they are dehumanised and referred to as "perpetrators" of "crimes". The literature is patronising and misogynist, with commodification of women a key element in the quest for "sales" of texts. MSBP is "romanticised" and "sensationalised" with texts displaying visual features of women "screaming" or out of control, or languishing, neurotic and hysterical in"Victorian-style".
NOTIONS OF DANGER: WHY WOMEN? WHY MSBP?
At this stage of my paper, I am returning to my anthropological roots in order to understand what is happening to these women. Why have they been involved in processes so clearly prejudicial? I see the concept of ambiguity, as raised by Mary Douglas (1966) is significant in relation to MSBP and notions of danger. Shilling (1993:72-3) states that her work shows how ‘the social body constrains how the physical body is perceived and experienced’. According to Douglas, individuals of marginal status are attributed with danger and pollution. In this way, mothers of children with illness which has been difficult to diagnose, are "ambiguous", and therefore they are seen as threatening by the medical profession. Douglas suggests that the concept of "danger" has more recently been replaced with the more neutral term "risk", however I argue that in relation to MSBP there has been a resurgence of the concept of danger. Baldwin (1999) takes up the issue of danger, stating that there are two aspects of danger in relation to MSBP: the free-floating notion of danger in relation to the child’s safety, and the pathology of individuals. He states that these pervade the medical literature.
Foucault’s notion of "the dangerous individual" is of significance in relation to MSBP. He refers to the upsurge of a new mental illness in the 1830s, at the time psychiatry was seeking to establish itself as a science. This illness was "monomania", a one-off madness in an otherwise sane person which results in homicide. It was therefore an invisible form of insanity, and it occurred in the domestic setting. Psychiatrists were used as expert witnesses in courts to determine whether an individual suffered from this mental illness or not. The medical profession became protectors of "the public hygiene". However, this diagnosis could not be sustained and its diagnosis ceased around 1870 (Kritzman 1988:133). It can be seen that there are many parallels with the recent upsurge in accusations of MSBP. In particular, it is seen as an "invisible" illness. Schreier (1993) emphasises that these women are "imposturing", posing as sane, caring and articulate mothers. Caroline Knowles (1996) extends Foucauldian notions of the dangerous individual in her notion of the family as a site of danger from the late 1980s. It is no longer seen as a place of refuge.
Why then are the mothers accused, rather than the fathers? Aligned to this notion of ambiguous individuals as polluted, is the notion that women are regarded as polluted and threatening, rather than men. Turner (1987:85) states that "throughout history women’s bodies have been treated as especially threatening". The female body is a metaphor of social relations. It is no surprise then, that women are seen to be the "perpetrators" of this crime in 95% of cases (Schreier 1993:7). Additionally, women have historically been treated in a discriminatory way by the psychiatric professions (Pringle 1998, Pilgrim and Rogers 1993), which had its impetus in the concept of women and "hysteria". During the course of my research, I realised that the experiences of these women were similar to witchunts. Allison and Roberts (1998) also refer to these similarities and state that many of the signs and symptoms of witches were related to their power to cause strange behaviour in children. All the women stated that they were "doomed if they do" and "doomed if they don’t" in relation to the way their behaviour was interpreted. Baldwin (1999) refers to this as "double-binding". The insistence on the use of a "profile" and the fact that the women are simply not believed, means that it is impossible for them to fight this label of MSBP. How then, can women show that they are innocent?
THE NOTION OF "FALSE"
When we speak about the notion of "false" allegations of MSBP we are actually considering two issues. First, the diagnosis itself may not exist - it may be a social construct without scientific basis. So how can a parent prove their innocence of an entity which in effect does not exist? Second, as soon as the notion of "false" allegations is raised, the onus is to "prove" that the parent is innocent. Perhaps this needs to be reversed. How can the medical profession prove that a MSBP diagnosis is indeed positive? In my interaction with parents it generally became very clear that there was no concrete evidence for the MSBP allegation. Therefore, the MSBP allegation itself was never definitively established, it was based on what I regard as flimsy "probabilities" and the technique of "profiling". I spent many hours with these women, generally on a repeated number of occasions, over many months or years. I studied their documentation, much of which had been excluded from medical opinion or excluded from the court process. In other words, I have spent far more time with these mothers than the doctors making the diagnoses, and I have had access to all documentation. Additionally, I found that the mothers and fathers rarely erred in their stories. They did not contradict themselves and whenever I found it necessary to make "checks", these nearly always fell into place.
If we consider statistics in relation to reports of child abuse, in 1997 in the U.K. (govt statistics), there were 65,000 reports of alleged child abuse of which less than 25,000 were found to have sufficient substance for the children to be placed on the Child Protection Register. Similarly in the U.S. in the same year, there were 3 million reports of child abuse of which less than 900,000 had any substance according to U.S.A. Department of Health and Human Services (Pragnell: pers. comm). This means that approximately two-thirds of these child abuse reports have been unsubstantiated. In Australia, in the calendar year 1997/98, there were 110,200 notifications. Of these, 26,025 were found to be substantiated (Aust. Institute of Health and Welfare). This means that approximately three-quarters of child abuse reports in Australia were not substantiated. What is particularly sobering about these statistics is the fact that parents accused of MSBP face a triple jeopardy: the accusation itself, the emotional prejudice which comes with it (making it difficult to prove one’s innocence) and very often the withdrawal of medical treatment for their child.
Is there any indication of how many MSBP allegations are made and how many may be "false"? It is difficult to know, since clear records do not seem to be kept. For example, there is no "coding" for MSBP by the N.S.W. Department of Community Services. We do not know how many MSBP notifications are made, and how many are substantiated or not. However, we may look to the work of Eric Mart (1999)for some indications in this regard. He states that Factitious Disorder by Proxy is particularly prone to overdiagnosis and that rare disorders are very likely to be overdiagnosed. He states there is no concrete evidence to show that Factitious Disorder by Proxy is anything except rare. To suggest otherwise, according to Mart, is a bit like the familiar riddle "How many undiscovered islands are there in the Pacific Ocean?"
How do these accusations or suspicions occur? There appears to be a culture of what I refer to as "certainty of doubt of parents" in the medical and social worker professions. Parents may be fast-tracked along a "pathway of suspicion". Baldwin (1999) refers to "triggers" for such suspicions, such as custody disputes, medical disputes, and failure to diagnose an illness. Allegations, grounded in suspicion, are often based in emotion, and may even be quite illogical. The "certainty of doubt" assures the practitioner excessive confidence in his/her own abilities as a practitioner, sometimes culminating in medical and emotional abuse.
Examples of such confidence can easily be found. High-profile practitioners such as Prof. Southall seem to believe that they do not make mistakes in diagnosing MSBP (20/20 Lies, Lies and Diagnoses video clip). In fact, Southall states that he believes he makes mistakes in the opposite manner - missing further cases. A further example of this "certainty of doubt" of parents, and certainty about one’s own practitioner skills, is demonstrated by Baldwin (1999). He refers to a case where the parents were charged with MSBP. A post-mortem showed the daughter had died from a degenerative muscle disorder. Baldwin states that the paediatrician "refused to believe the post-mortem results, stating that if indeed it was that particular disorder, he would have found it". Such certainty leads to parents being pursued, even if found innocent in court. One parent, Deborah, referred to this as the "Rottweiler syndrome", where doctors pursue mothers, even internationally.
Similarly, there may be an assumption of "guilt". For example, the belief that the Cleveland Affair in the UK, exposed by social worker Charles Pragnell, was not scandalous, and that most of the parents were in fact guilty of sexual abuse. These views are held despite the fact that Pragnell’s findings were supported by the Butler-Sloss Inquiry (pers. com) and there is no definitive evidence to the contrary. Against such certainty, how does a parent prove their innocence? Diagnoses such as MSBP are "closed diagnoses" (Reid 1999), once they have been said about a parent, it is almost impossible to prove one’s innocence. Baldwin (1999) refers to this as a "trajectory" which the parent cannot unwind, even in the face of contradictory evidence.
How does the suspicion progress? I argue in my doctoral thesis that the process of suspicion occurs due to the dismissal of emotional distress of parents when their children are ill, and medical training for lack of compassion. My research data show the path of suspicion may involve the following steps: blaming parents and making hasty, ill-informed moral judgements, dismissal of clear organic symptoms, trivialisation of symptoms, withdrawal of care for the child and medical neglect, communication and listening difficulties, hasty diagnosis, blaming "the mind", patronising of parents, interpretation and misinterpretation presented as fact, judgements about family coping mechanisms, and recruitment drives of doctors into the MSBP diagnosis.
Despite such attitudes of certainty and suspicion, some practitioners such as Rand and Feldman (1999) are now acknowledging the possibility of false accusations. However, I argue that they erroneously cling to the idea that these mistakes are few and far between.
Despite the fact that most diagnoses of MSBP are highly subjective and based on flimsy evidence, practitioners believe strongly in the cases they diagnose. This means that medical practitioners set themselves up as the arbiters between the "real" cases and the ones that may have been "false". I would argue that perhaps most of them may be false and that medical practitioners may rarely diagnose "positive" cases accurately. This means that mothers who are "real" in Rand and Feldman’s view, but who may actually be innocent, will find it even more difficult to prove their innocence if MSBP is given scientific reification. In other words, in trying to highlight a few "false" diagnoses, the so-called "real" diagnoses are given heightened scientific credibility. Subjective diagnoses are made into "scientific fact".
RESISTANCE: "GOOD FAITH" AND "BAD FAITH"
The process of suspicion may not occur at all. In some cases the allegation of MSBP does not appear to be based in suspicion or certainty of doubt, rather it appears to be based on "retaliation" and "silencing". In essence, what we are speaking about here are "good faith" allegations versus "bad faith" allegations. However, a post-structuralist perspective would not dichotomise in this polarised manner . There may be a merging of "good faith" and "bad faith" at various times. How do women resist such a subjective "diagnosis"? Certainly resistance plays a definitive role when mothers believe that the allegations made against them are vexatious, or at least contain elements of "retaliation", as the mother progresses down the "trajectory" of the MSBP allegation. "Heather", in my case study, regarded herself as having been accused in a vexatious manner. She resisted her accusation vigorously and began to regard herself as the Australian version of Patty Ames in the U.K. In Patty’s case, it seemed as if she was projected along a "trajectory" which had its origins in a bitter custody dispute in the United States and which later developed "retaliatory" elements.
(at present parents have requested that this paragraph not be placed on the web)
RESISTANCE AND INVESTIGATIONS
Against almost overwhelming odds, many mothers have continued in their resistance against allegations. As well as fighting to regain custody of their own children, they have actively been involved in making sure that other women have been protected. The resistance of mothers against false allegations is a resistance based in emotion, refuting Foucauldian concepts of passivity and lack of resistance in the post-modern world. Foucault neglects to consider emotion, perhaps because his arguments are not based on primary research. Nearly all the mothers I spoke with who had been accused of MSBP were extremely assertive women who questioned doctors. A major proponent of MSBP in the U.S., Dr. Herbert Schreier (1993), states, "early on we recognised that these women were not wholly passive in their interactions with the medical profession"! Donald and Jureidini (1996) also show concern about the mother holding "the upper hand in the struggle to remain in control".
Recently, investigations into the practices of certain doctors and the diagnosis of MSBP have been instigated in a number of states and countries, spearheaded by women falsely accused and other interested parties. For example, in Australia I know of two investigative bodies who are proceeding with investigations after consideration of complaints from parents. However, the efficacy of these "investigations" is difficult to determine. The Public Interest Advocacy Centre in Sydney has also instigated an investigation into the diagnosis of MSBP and the process of notification to community services.
In the U.K., complaints about Prof. Southall and MSBP are being investigated by the independent Griffiths inquiry. These inquiries are considering some of the following issues: Diagnoses of MSBP; experiments with premature babies, and the use of a specific ventilator for premature babies. Prof. Southall has allegedly agreed to withdraw from current child protection work whilst the investigations are proceeding. The 20/20 video by reporter Genevieve Westcott highlighted difficulties with false allegations in the U.K and it now appears that 5 families have proceeded with legal action (Morgan:pers.comm). In the last few weeks, the Royal College of Paediatrics and Child Health (RCPCH) in the U.K. has recommended to its council that guidance should be issued to members on how to deal with people who are suspected of MSBP. The RCPCH which has conducted a detailed survey into the extent of diagnosed MSBP cases, say that because the condition is rare, doctors need help in identifying it correctly (BBC 1999). Additionally the British Medical Council has received complaints about false allegations of MSBP from at least ten parents and Staffordshire police are investigating parent complaints over "consent" to medical trials with premature babies.
Patty Ames has placed a complaint against a practitioner with a State Medical Board in the U.S., with mixed results, as has Ellen Storck. Patty Ames has also filed a complaint with the relevant State Attorney General. I have documentary evidence of one practitioner failing to appear in court as a witness. Other families in the U.S. have successfully sued doctors and community services, for example in the case of Angela Cochrane. A number of families are currently suing Vanderbilt hospital including the Patricks (owners of the M.A.M.A.website) and three families (Wise, Evans and Neeson) have apparently successfully won suits against UCLA hospital.
RESISTANCE AND PUNISHMENT
According to the parents I spoke with, there has been "retaliation" for bringing these issues to the attention of the public. For example, in the U.K., Ms. Penny Mellor, advocate of mothers falsely accused of MSBP and one of the researchers involved in U.K. investigations, has been arrested on two occasions, her computer and other documents being seized without warrant. Families involved in giving evidence in the Griffiths inquiry have also had their homes raided. Journalist Brian Morgan has been arrested and charged as an "accomplice in kidnapping" (pers. comm).
Other parents, not "activists", also spoke about the discriminating manner in which they were treated - the trajectory of doubt, certainty and suspicion leading to prejudicial and distressing outcomes for parents. Connections between MSBP allegations and punishment in the medical profession are raised by Allison and Roberts (1998:84). They refer to rapid cultural changes within the medical profession during the 100 year period between publication of Cheyne’s (1733) The English Malady and Gavin’s (1838) On the Feigned and Factitious Diseases. They suggest that British medicine became less tolerant of disorders that appeared to be fabricated. Allison and Roberts refer to Gavin’s text as the "official bible, the nascent DSM, of this newly punitive medical era". His text is seen by Allison and Roberts as allowing medicine’s primary concern of healing the sick to become one of detection and punishment (87). This punishment involved coercion, torture and terror in order to get a forced confession from the patient (90). The intense focus on "eliciting a confession" from MSBP mothers is similar to this process. The more the mother vehemently denies she is guilty, the more the medical profession insist that this is simply a symptom of her guilt and deception. How would an innocent person respond? The work of Foucault is insightful here. He illustrates increasing invisible surveillance in the post-modern world, highlighted in his text Discipline and Punish (1977). The Panopticon, an architectural design of a prison or hospital, illustrates this disciplinary form of power. Most parents I interviewed who had been accused or suspected spoke about both surveillance and deception in the process of their MSBP allegation. However, I would argue that Foucault’s disciplinary form of power is too sanitised a notion for the parents accused of MSBP. In reality, it is a form of "sovereign" power, where punishment is overt and public humiliation occurs. It is a form of "power" which is extremely difficult to resist.
If parents are harming their children, then a child needs to be protected. However, it is not ethical to hastily accuse parents, using non-transparent and unaccountable methods. It is not acceptable to simply state that this is "child abuse", which may somehow justify false allegations and deception. Every attempt must be made to protect parents from such situations. The MSBP "diagnosis" is questionable in regards to scientific validity, and is highly prejudicial to the mother. I argue that many accusations of MSBP are either false or highly questionable, causing grievous damage to families. I found that it was the data from the medical professions, rather than the parents, which did not hold up to intense scrutiny. I found that it was the behaviour and procedures of the professionals, rather than the families, which was unacceptable. As one mother, Rebecca, stated to me, about the doctors involved with her family, "it’s as if they aren’t even human".
1. Fundoplication - mobilisation of lower end of the esophagus and plication of the fundus of the stomach around it (fundic wrapping) in treatment of reflux esophagitis
2.Manometry - the measurement of pressure by a manometer
3. Whaley and Wong (1991) Nursing Care of Infants and Children pp1499-1501, Maurer, H. (ed) ?(1983) Paediatrics pp507-8, and Hutson, Beasley and Woodward (1992) pp 119-20
4. Nixon and O’Donnell (1992) The Essentials of Paediatric Surgery (pp119-122) insist that a wrap should be loose and for this reason a three quarter wrap is preferred by some surgeons.
5. Lavine, J Hattner, R and Heyman, M (1988) Dumping in Infancy Diagnosed by Radionuclide Gastric Emptying Technique in Journal of Pediatric Gastroenterology and Nutrition: 7:614-618.
6. Ibid , p614-618
7. Carvajal, S and Mulvihill, S (1994) Postgastrectomy Syndromes: Dumping and Diarrhea in Gastroenterology Clinics of North America Vol. 23 no. 2 June:261-271
8. Gastrostomy - surgical creation of an artificial opening into the stomach.
9. Lavine et al 1988 op cit, p615
10. Conelius et al. (1993) Octreotide: A Long Acting Somatostatin Analog in the Management of Post-operative Dumping Syndrome, Digestive Diseases and Sciences Vol. 38 No. 2 February p362
11. naso-jejunal tube - a tube is placed down the nose, through the stomach, duodenum and jejunum.
12. Carvajal, S and Mulvihill, S (1994) op cit p 262
13. scintigraphy - the production of 2 dimensional images of the distribution of radioactivity in tissues after the internal administration of radionuclide.
14. Phrase coined by Barbara Bryan
Allison, D. and Roberts, M. (1998) Disordered Mother or Disordered Diagnosis? Munchausen ?Syndrome by Proxy Hillsdale: The Analytic Press.
Baldwin, C. (1999) Unpublished PhD dissertation
Baldwin, C. (1996) "Munchausen Syndrome by Proxy: Problems of Definition, Diagnosis and ?Treatment" Health and Social Care in the Community 4 (3), 159-165.
Bergeron, M. (1996) Hegemony, Law and Psychiatry: A Perspective on the Systemic Oppression of ?"Rogue Mothers" in In re Aaron S. Feminist Legal Studies Vol. IV No. 1.
Donald, T and Jureidini, J (1996) Munchausen Syndrome by Proxy Archives of Pediatric ?Adolescent Medicine Vol. 150 July.
Douglas, M (1980/1966) Purity and Danger: An Analysis of Concepts of Pollution and ?Taboo London: Routledge and Kegan Paul
Foucault, M. (1977) Discipline and Punish London: Tavistock
Feldman, M. and Ford, C. (1994) Patient or Pretender, Inside the Strange World of Factitious ?Disorders. New York: John Wiley and Sons Inc.
Kritzman, L. (1988) Michel Foucault, Politics, Philosophy, Culture, Interviews and Other ?Writings 1977-1984 (trans. Sheridan and others) London: Routledge
Mart, E. (1999) Problems with the Diagnosis of Factitious Disorder by Proxy in Forensic ?Settings, in American Journal of Forensic Psychology, Vol. 17, Issue 1
Meadow, R. (1995) "What is, and what is not, Munchausen Syndrome by Proxy?" Archives of Disease ?in Childhood 72 (6): 534-39
Morgan, B. (n.d.) Death from Munchausen Syndrome by Proxy is Overestimated
Morley, C.J. (1995) "Practical Concerns about the Diagnosis of Munchausen Syndrome by Proxy" ?Archives of Disease in Childhood 72:528-538)
Pilgrim, D and Rogers, A. (1993) A Sociology of Mental Health and Illness, Buckingham: Open ?University Press
Pragnell, C. (n.d.) Diagnosis of Munchausen Syndrome by Proxy Should be Viewed with Extreme ?Caution
Pringle, R. (1998) Sex and Medicine, Gender, Power and Authority in the Medical Profession ?Cambridge: Cambridge University Press
Rand, C and Feldman, M. (1999) Misdiagnosis of Munchausen Syndrome by Proxy: A Literature ?Review and Four New Cases Harvard Review of Psychiatry Vol. 7, No. 2 July/August
Rosenberg, M. (1987) "Web of Deceit: A Literature Review of Munchausen Syndrome by Proxy, ?Child Abuse and Neglect Vol. 11:547-563
Schreier, H. and Libow, J. (1993) Hurting for Love, Munchausen Syndrome by Proxy Syndrome, New ?York: The Guildford Press
Turner, B. (1987) Medical Power and Social Knowledge. London:Sage
THE PARENTS IN MY INTERVIEWS
To date, I have engaged in thirty one indepth interviews of parents (mothers and a few fathers) of children with chronic illness where there have been difficulties with diagnosis. Of these thirty one parents, nine were accused or definitively suspected of MSBP. However, a further five were either referred to psychiatrists or were very clearly suspected of MSBP, although this had not been confirmed by reference to hospital files. This means that approximately fourteen out of the thirty one parents, nearly half the parents interviewed, were clearly suspected or accused of MSBP. Having made this statement, it should be viewed with some caution and should not be interpreted simplistically, because the collection of my data was a complex process. I did not initially search for parents accused, or falsely accused of MSBP. In fact, I was almost entirely unfamiliar with the concept when I began my research. The involvement with accusations of MSBP was therefore a process which evolved during the course of my study, as I discovered parents who appeared to have been "falsely" accused of the syndrome. It should be noted at this juncture that my research work is qualitative, primarily concerned with the experiences of these parents, rather than quantitative outcomes. Any tables used are for the express purpose of furthering an understanding of these parental experiences.
Where did I find the parents to interview? This was mainly a process of "self-selection". I made contact with parents through local media, organisations such as AWCH (Association for the Welfare of Children’s Health), and AHMF (Alison Hunter Memorial Foundation), "snowballing" and the Internet. As I realised that MSBP was an issue, I made contact with the M.A.M.A. (Mothers Against Munchausen by Proxy Allegations) website which originates in the United States. Over time, the M.A.M.A website gave me access to mothers accused in Australia. This interest in MSBP parents did not deter me from making further interviews with other parents. In this way, further cases came to light, even though I had not actively sought them out. At this stage it was tempting to exclude parents who had not been accused of MSBP, however I concluded that MSBP allegations may be the"extreme" end of a spectrum of experiences faced by parents and children in these situations.
These indepth interviews or"narratives" were undertaken in different States of Australia. However, in order to gain an international perspective and a deeper understanding of MSBP issues I utilised telephone, email or personal discussions with another eighteen parents in Australia, New Zealand, the United States and the United Kingdom. Of these eighteen parents, fifteen had been accused or suspected of MSBP. These contacts were not superficial, but involved intense discussion, often on numerous occasions. Since the MSBP "diagnosis" had gained momentum earlier overseas than it had in Australia, due to protagonists in the U.S. and U.K., these contacts became invaluable.
What concerned the parents about the process of the diagnosis of MSBP? Most parents showed me evidence of flawed methodology. Parents spoke about (and usually provided supporting documentation) of such difficulties as: exclusion of documentation which supported their innocence, tampering with files, fabrication of evidence, hearsay evidence in court, intimidation, blackmail, inaccurate medical summaries, factual error, misinterpretation of behaviour, cruelty to the child involved, withdrawal of treatment, hospital medical errors and mismanagement, lack of knowledge of overseas expertise or lack of expertise in the relevant specialty, and attribution of father’s comments to the mother. It must be emphasised that these difficulties formed patterns - the same problems appeared repeatedly in the interviews and discussions I conducted. It became increasingly clear that these allegations of MSBP were "false" or at the very least, highly questionable.
Considering the difficulties these parents experienced in the process of their "diagnosis", it is pertinent at this point to look at the procedural outcomes for the nine parents who had documented evidence of the MSBP accusation or suspicion.
| Formalisation of Accusations: | |
| Notifications |
|
| Progression to Court Processes following notification |
|
| Results of Accusations: | |
| Supervision orders |
|
| Temp. guardianship lost but rescinded |
|
| Lost permanent guardianship |
|
| No action |
|
There were complex reasons for the different outcomes for these mothers. The parents who did not face any further action were "protected" by committed and extremely supportive paediatricians in two instances and by an officer of an investigative body in the third. In other words, it is the "stories" behind these outcomes, rather than the figures themselves, which are significant.
How are such difficulties created for these parents? What types of illnesses do their children display? Table 2 below shows the spectrum of illnesses based on both the indepth interviews and the additional discussions I held. Some parents had more than one child who were seen to be "at risk" and the illnesses of some children overlapped categories. It should be noted that this categorisation is in many senses "very loose". I found during my research that many of the children’s difficulties were linked to each other. For example, severe reflux and "gastro" problems could be found with the Chronic Fatigue Syndrome children and those with immune problems. As my interviewing progressed, it was alarming to note that many of the parents had children who had been extremely premature. These children therefore started their lives with difficulties, and parents complained that they were not supported, but rather criticised and blamed for the children’s problems. The Yvonne Eldridge case in the U.S. is an example of a mother being accused of MSBP when the foster babies in her care had clearly been shown to suffer from prematurity and/or substance addiction (Allison and Roberts 1998
Work by Barbara Bryan (NCADRC: National Child Abuse Defense and Resource Center, Ohio) highlights many illnesses which are misdiagnosed as MSBP or child abuse. Videos of Expert Witnesses are provided by this centre to educate professionals and include the following: Dr. Piero Rinaldo, medical geneticist on IEMs, includes false "poisoning" and "suffocation" material; Dr. Ian Turnbull, paediatric neuroradiologist who illustrates disease and genetic alternatives for apparent presentations of injury, especially to the head; Dr. Colin Paterson, who looks at genetic and dietary explanations for "brittle bone" disease and explains how spiral fracture may not always be indicative of non-accidental injury; Dr Marvin Miller on "temporary brittle bone" from which a baby may recover, Dr. Ayub Ommaya and "shaken baby syndrome". In Australia, Dr. Vera Scheibner, retired research scientist with a doctorate in Natural Sciences, who acts as an expert witness in court, indicates that many parents are being falsely accused of MSBP or "shaken baby syndrome". She states emphatically that the children may actually be suffering from the ill-effects of immunisation.
| Epilepsy |
|
Congenital disorders |
|
| "Gastro" |
|
Apnoea |
|
| CFS/ "anorexia" |
|
ADD (attention deficit disorder |
|
| "Immune" problems |
|
Tonsils |
|
| Pesticide/chemical sensitivities |
|
Nothing |
|
What are the ramifications of false accusations of MSBP? I refer to these as the "embodied consequences"(Hayward-Brown 1998) as they involve the day-to-day facts, underlined by the phenomenological "lived experienced", which involves bodily and emotional reactions to distress. One immediately clear consequence is the death or serious illness of the child when it is removed from its parents. Aligned to this is the maternal and familial deprivation which occurs as a result, perhaps involving wrongful imprisonment of the mother. Fear, anxiety, anger and distress were common long-term inheritances of these painful experiences. One mother I interviewed attempted suicide on two occasions. When a mother is suspected of MSBP she is immediately isolated, and support is withdrawn. As soon as she is suspected she will be treated as guilty and treatment of her child usually ceases. Even if a child is only suspected of being "at risk" it may be removed from its parents. Additionally, a mother may become too terrified to take her child to the doctor, for fear of being seen as over-protective or over-utilising hospital services. Doctors use a "snowball" effect to inform each other of the mother’s "problem". Even if the mother is proved innocent, it is too late to restore damage to her reputation. I refer to this as the "closed circuit of doctors". If a doctor speaks out in favour of a mother, he/she risks conflict with his/her medical colleagues. Clearly, a final consequence for many families is their involvement in protracted court cases in an attempt to keep their children or clear their name, if their child has not already died. This usually involves great financial and emotional distress. For all parents, the final embodied consequence is the sense of betrayal which remains.
I would now like to present a case study, which illustrates the difficulties parents may face when they are accused or suspected of MSBP. I shall call this story "Heather’s story" although the data has been confounded to protect the identity of those involved. In essence, this story is the compilation of a number of stories from different mothers. The story has been carefully woven together, so that the credibility of the experiences are not affected in any way. Let us say that Heather’s daughter suffered severe reflux and "gastro" problems. The story outlines confusion and conflict over medical management and diagnosis. I could easily have chosen an example where allegations have been definitively proven to be false, as in the case of Lorraine, whose son who was later diagnosed with a chromosomal disorder (Hayward-Brown 1998). However, I have deliberately chosen an example where the medical issues are more complex, because it is these situations which often result in "false" allegations. The parent narratives I heard, with supporting documentation, told a completely different story to the "official" medical one. Baldwin (1999) refers to the medical narrative as the "metanarrative", where a "tactic of narrative privilege" occurs in relation to parent narrative. Blakemore-Brown (20/20 video n.d.) also states that because these parents’ stories are viewed as "lies", they are never believed. My case study is by necessity a lengthy one, because I believe that often, although not always, it is the details of these cases that are significant in gaining a full understanding of a situation. I would argue that case studies in the medical literature are often rudimentary.
HEATHER’S STORY"IN LUNA PARK: JACK IN THE BOX FILES AND THE EMOTIONAL ROLLERCOASTER"
Heather is determined to fight what she regards as an issue of immense injustice in relation to allegations of MSBP. I first discovered Heather’s predicament through the M.A.M.A. website in the United States. Over time I found three more mothers who had suffered similar difficulties with the same doctors. Some of these mothers spoke about other parents who they believed had also been accused. Heather was initially concerned about whether or not she could trust me. In fact, I had email contact with Heather over a number of weeks before she had the courage to give me her name or any personal details. She has four children and comes from an Israeli migrant background. We first met in her home in a remote rural settlement in Victoria. Sitting together on the lounge, we ploughed our way though her paperwork. Heather has a background in the health professions, (unfortunately one of the "symptoms" in the profile of the MSBP mother), and this knowledge gave her a good understanding of medical mismanagement issues. Her narrative was peppered with references to the medical literature to support her claims. She has been meticulous in her documentation.
Where does Heather’s story start? It starts, in fact, with her own medical history. She suffers from auto-immune disease and had difficulties with her pregnancy. To avoid early labour she received treatment with a battery of appropriate drugs . She gave birth spontaneously, but prematurely. A few hours later her child went into respiratory distress, would not suck and was severely hypoglycaemic. The child was put on a drip for ten days and was tube-fed. Heather herself suffered a slight stroke as a result of the birth.
How did the child progress? There was some difficulty with weight gain and at about 4 months of age she developed what Heather described as a "weird rash" on her face, buttocks and groin, which was finally attributed to temporary zinc deficiency, after initial misdiagnosis. Her symptoms included reflux, vomiting and gagging on feeds. At six months of age the baby was admitted to the local hospital for tests. These included a barium swallow and a pH probe which revealed 60% reflux. The difficulties continued, including one apnoeic episode. Heather complained to me that the specialist who took over the treatment did not use "conservative" techniques to control the reflux. Instead, Heather told me that the specialist "medicalised treatment", instigating naso-gastric feeds and drug treatment with Cisapride.
Attempts at feeding by mouth were difficult, since by 11 months of age the child had been continuously tube fed for three months. Heather alleged that her specialist refused to co-operate with the speech therapist or dietitian. The episode of apnoea meant that Heather and Unwin were referred to a surgeon for a fundoplication1. They indicated that they were not told that this fundoplication could result in "dumping syndrome". "Dumping syndrome" results from gastric surgery and is due to rapid transit of food from the stomach into the small bowel. Additionally, tests such as manometry2 which would have highlighted her daughter’s bowel motility disorder were not performed3.
Heather stated in her complaint to the investigative body that they specifically told the registrar that they did not wish to have a 360 degree fundoplication. They made this request after seeing the results of other children in the ward. This request was ignored and a 360 degree fundoplication, rather than a three-quarter, was performed, Heather once again referred to the medical literature4 and also stated that the vagus nerve was damaged during the operation, which may increase the likelihood of "dumping syndrome"5.
What transpired after the operation? Their daughter experienced lethargy after eating, blank staring eyes, floppiness, had a tendency to sleep and would become unconscious, suffered severe diarrhoea, dry retching, and an aversion to eating food since it produced abdominal pain. These symptoms are all symptoms of dumping syndrome, yet dumping syndrome was not diagnosed for 9 months. Additionally, when diagnosed, Heather said that she was told that this was a very rare complication, despite medical literature which states that such a syndrome may develop after Nissen fundoplication6 and that it is the most common cause of morbidity after gastric surgery7 with 25-50% of all patients undergoing gastric surgery suffering some symptom of dumping.
Unfortunately, according to Heather, their specialist decided to insert a gastrostomy tube8. Heather and Unwin objected to this operation as they had seen the results of such procedures. She referred me to medical literature of the time which states that dumping syndrome can be worsened by the insertion of a gastrostomy tube if the tube is wrongly inserted9. Heather alleged that the specialist threatened them and stated that if they did not consent to this operation he would notify the Department of Social Services. Heather spoke about her experiences at this time:
- Following the insertion of the gastrostomy tube...our lives became unbearable. Our daughter’s dumping syndrome worsened. My life became centred around clearing up her diarrhoea, listening to her crying with abdominal pain, and having the continual stress of repeated re-admissions to hospital.
The specialist’s response to the child’s deteriorating condition was to insert a naso-jejunal tube11. Heather once again pointed to medical literature12 which shows that such insertion would be contraindicated, since there is duodenal feedback inhibition of gastric emptying after bypass of the duodenum with gastro-jejunostomy tube. The child’s dumping syndrome worsened.
Furious about what they saw as medical mismanagement, Heather and Unwin consulted with another specialist at the same hospital, who instigated a diet for their daughter. After removal of the gastrostomy tube, they were now expected to feed their daughter, despite the fact that she had not effectively eaten any solid food for three years. According to Heather, this new specialist insisted that the child did not have dumping syndrome, later contradicting himself and saying that he knew nothing about dumping syndrome. Heather and Unwin now requested a full review of their daughter’s care over the previous years. They also wished to instigate a further review by a specialist at another hospital. She stated:
- I actually threatened the hospital and told them the deep shit they were in, two days later they held a child protection meeting, ten days after filling in a child disability form.
- What they did, they said, if we formalise our complaint with the investigative body that they would put in a notification to Community Services about us.
Experiences from the original hospital continued to "haunt" her and confuse issues. For example, Heather spoke about endocrine tests which were undertaken. She showed me copies of the results of these tests which showed abnormality. She commented:
- They do these endocrine tests and my daughter passed out and went unconscious, all her insulin and blood sugar levels and all of these things were grossly abnormal, and all of this was witnessed by the clinical nurse specialist, the registrar, the specialist etc but in our child protection file all the results were normal, she didn’t pass out, nobody witnessed anything.
- It actually says in the notification that the child protection unit has been involved with my family for years. Now I have never met anybody from the child protection unit..
Heather was also accused of removing her daughter’s tube. She commented:
- My daughter’s gastrostomy tube fell out when she was over there, and I was over there [pointing quite a long distance to other side of room], and I was physically talking to this doctor, my daughter was like over there, near that door, and this doctor, I said, please, can you tell them that I was talking to you and he refused. And I thought, you arse-hole.
Over a number of months Heather became increasingly worried about the care her daughter was receiving at the new hospital. She became concerned that documents from the original hospital, stating that she was suspected of MSBP, had been forwarded to the new hospital. This was confirmed when a doctor would not giver her daughter treatment, "in case she had Munchausen’s". She was amazed by these views, particularly in the light of her daughter’s recent weight gain when the new diet was instigated (see chart). Heather felt that her child had been left without adequate hospital treatment, and she could only rely on her local GP, who had always been fully supportive but felt increasingly under threat. At this time Heather told me that her GP and an officer of the investigative body both verified and confirmed that the medical history from the original hospital was inaccurate, "falsified" and misleading.
However, Heather was feeling a lot safer because she had received and signed the list of questions which were to form the basis of an investigation into her diagnosis of MSBP:
| 1. | On what information did the doctors base their diagnosis of MSBP? |
| 2. | What was the basis for the shift in the diagnosis of MSBP from a differential diagnosis (i.e. query possible MSBP) to MSBP as the basis for a child protection notification? |
| 3. | Was the notification made in an attempt to intimidate you not to complain about medical treatment? |
| 4. | Did Dr. ( ) threaten you that he would make a notification to Community Services? |
| 5. | Did the supporting documents for the notification exclude documents on the hospital file which conflicted with a diagnosis of MSBP? |
| 6. | Was the notification made after your daughter left the care of the original hospital? |
| 7. | Was the notification made without any reference to the current treatment team at the new hospital? |
| 8. | Did Dr.( ) provide "new evidence" to Community Services concerning the notification when he had not seen your daughter for one year? |
Heather made it clear to me that nobody would take responsibility for her situation. She spoke about how investigative bodies and departments "bounced" her backwards and forwards. During this time, her file at community services was open, shut and suspended like a jack in the box. She made the following comment:
- The reality is no-one gives a damn about our family. As has been pointed out several times to me, this was never about my daughter. It was about power and me attacking the system.
- I feel that I have been emotionally raped and my trust in people, that I don’t know very well, is practically non-existent.
As can be seen, Heather’s story raises many issues about the diagnosis of MSBP. Definitions of the "diagnosis" vary widely and are hotly debated in the medical literature. My research showed that other labels were often used in conjunction with the MSBP diagnosis, or as similar alternatives, some directed at the parents, and some directed at the child. These labels include: somatisation disorder, abnormal illness behaviour, folie a deux, pervasive refusal syndrome and hysteria. For example, Donald and Jureidini (1996) state that somatoform disorder will "raise the index of suspicion for MSBP". These "illnesses" are seen by the medical profession to be the result of "over-protective" or "helicopter" (Feldman and Ford 1994:152) parents. This is the driving force behind the "diagnosis". I argue elsewhere (Hayward-Brown 1998) that this emphasis on the "over-protective" parent has arisen from psychology’s emphasis on the development of an individual identity, rather than a phenomenological understanding such as that put forward by Merleau-Ponty (1962/1964), who suggests that when love is concerned, identities may merge.
Should the diagnosis of MSBP be used at all? Of concern is the fact that some practitioners suggest that "exaggerating" a child’s symptoms is all that is needed for a MSBP diagnosis. Whilst it is clear that some parents do harm their children, it may be more prudent to follow Morley’s (1995:529) suggestion that the MSBP label be discarded. He suggests that a practitioner should simply indicate what he feels may be occurring - if it is poisoning or suffocation, call it that. Nevertheless, there are potential difficulties with this procedure also. For example, Bryan (pers. comm) suggests that many IEMS (inborn errors of metabolism) present as suffocation or poisoning. Additionally, this may change the way a mother may be viewed by the law, for example, in relation to murder vs. manslaughter.
Paediatric versus Psychiatric "Diagnosis" and Links with "Diagnosis by Immaculate Perception"14
Meadow was the first practitioner, in 1977, to use the term "Munchausen Syndrome by Proxy". For medical professionals such as Meadow and Southall in the UK, the "diagnosis" of MSBP is a "paediatric" one. MSBP is therefore often interpreted as "child abuse" and a psychiatric diagnosis of the mother is given low priority. But how can we consider the child’s condition, without reference to the mother’s behaviour? Unfortunately the emphasis on the child leads to "diagnoses" where the mother may not be interviewed. It also leads to diagnoses which may exclude genetic and other factors.
In the U.S., the "diagnosis" is seen as a psychiatric one, led by practitioners such as Schreier and Feldman. The mother is diagnosed with a mental illness. According to Schreier (1993) the mother wishes to gain attention from her doctor (1993). According to Rand and Feldman (1999), the mother wishes to experience the rewards of "the sick role". For Donald and Jureidini (1996) the mother continues a "pathologic relationship" with the medical profession. Despite the focus on the mother, interviews may still not be conducted with the mother. For example, Schreier testified in the Storck case that it was not important to interview Mrs. Storck [He offered that such an interview would have served no useful clinical purpose since he] cannot discern from parent interviews who is telling the truth and who is not" (Bergeron 1996).
The medical profession have moved to change the label a number of times, for example to factitious disorder by proxy, and this further complicates issues. In Australia the diagnosis "flits" from the paediatric to the psychiatric. If a parent receives a psychiatric report refuting MSBP, then this report is deemed "irrelevant" - the diagnosis "turns" into a paediatric one, despite the fact that the psychiatrist’s report was requested by the doctors in the first place. This occurred with Rebecca and Charles. As an example of confusion with the "psychiatric" versus "paediatric, I refer to a paediatric psychiatrist’s evidence in court which I attended. This practitioner referred to Meadow and the fact that the diagnosis was a paediatric one. His evidence centred on the child and the foster mother who was given glowing reports. However, at the end of his evidence he made the following statement, directed at the accused mother: "Other people may see your composure in court as a strength, but I see it as further evidence of your disassociation". Clearly, a psychiatric evaluation of the mother, yet he had never consulted with her and had only seen her on one previous occasion in court. He had never spoken with her.
The issue of consultation is a critical one. Two of the mothers I interviewed, Narelle and Fiona, were "diagnosed" by email/mail. Fiona was initially diagnosed in this way, despite the fact that the evidence of her psychiatrist, pointing clearly to her innocence, was removed from the documents when they were first sent for "overseas expert opinion". Many of the parents I interviewed referred to the fact that diagnoses were made without the practitioner meeting them, and in some cases, their children. This is such a common practice that it is now referred to by activists as "diagnosis by immaculate perception"or "Munchausen Syndrome by Proxy by Proxy". Despite the fact that the American Medical Association has recently condemned prescribing of medication over the Internet, without face to face consultation, similar practices with MSBP continue. It may be related to assertions such as those made by Donald and Jureidini (1996) that medical practitioners who have had long-term involvement with families are deceived by these mothers, and are therefore "colluding" with them. They suggest that these medical professionals are guilty of generating and maintaining MSBP. A number of parents also asserted that community services had opened a file on them, yet they had never met with the family. Morley (1995:529) shows concern about lack of thorough medical consultation with the mother in these cases, who are then confronted with a MSBP allegation. He refers to this behaviour as "indefensible".
Is the MSBP Diagnosis Scientifically Valid?
The MSBP "diagnosis" is a "research" diagnosis only. It is not a definitive category in the DSM IV (1994 ref), only appearing in the appendix. It is a recent and extremely controversial diagnosis (Allison and Roberts 1998).
The lack of scientific credibility of the diagnosis can be seen by recent court outcomes in the United States. A number of courts have ruled that the use of the MSBP diagnosis is not admissible in court. These include Martinez v. United States of America, State v. Lumbrera, and Commonwealth v. Robinson. Presently, in the matter of the State of Florida v Kathleen Bush, the same argument is being put forward. In fact, it is argued in these submissions that MSBP, since it is an "emotional topic" is "unfairly prejudicial". For example, medical professionals may refer to their experiences with previous children’s deaths and use "melodramatic" evidence of "death rates", based on statistics which are debated in the literature, but presented in evidence as "fact". Baldwin (1999) would argue that such "statistics" are socially constructed into "facts".
It is argued in these cases that expert testimony in relation to MSBP is unreliable. I am not a lawyer, and would be extremely wary about making more than brief remarks about such issues. I can only outline what I have gleaned from documents tendered to courts. These documents state that according to the US Federal Rule of Evidence 702, the presentation of "expert testimony" should be on the basis of "scientific, technical or other specialised knowledge". It is further argued that an expert testimony must "rest on a reliable foundation", (according to Daubert v Merrell Dow Pharm Inc.) and therefore MSBP cannot be covered by this criteria. Daubert provides a five factor non-exclusive test: 1: whether the expert’s theory can be or has been tested, 2: whether the theory has been subject to peer review and publication 3: the known or potential rate of error of a technique or theory, 4: the existence and maintenance of standards and controls and 5: the degree to which the technique or theory has been generally accepted. In Australia The Rules of Evidence Act is extremely complex. I can only comment that it appears that the probative value of expert testimony (and the MSBP label) must be weighed against the prejudicial effect.
It is the issue of profiling which I argue is extremely prejudicial and inaccurate. It also lacks scientific validity. The M.A.M.A. website lists the "characteristics" which supposedly "alert" a medical practitioner to MSBP and which comprise the "profile" of a MSBP parent. This "profile" and list of MSBP indicators is being used by medical practitioners to hastily condemn women. For example, Jureidini (1996) and Feldman and Ford (1994) suggest that it is best to act quickly, gathering evidence later. The list provided in 3 table below is not exhaustive. For further details, refer to Baldwin (1996) where the paradoxical nature of these lists is highlighted. For example, over-concern, but also lack of concern, overly co-operative behaviour with medics, versus non-compliance with medics, confession versus denial. Of particular concern for Morley (1995) is the fact that doctors engage in "blackmail". Mothers are told that they have to confess to MSBP or they are unlikely to have their children back. Mart (1999) also raises the notion of the "anti-profile". He asserts that the opposite of the behaviours listed would be far more abnormal than the profile behaviours. Similarly, Allison and Roberts (1998) raise issues of concern about the use of "syndrome" in "psychological" diagnoses. They (1998:140) point out that the medicopsychiatric definition of syndrome is far too broad and "given to a considerable amount of vagueness", based on a "cluster of symptoms".
I would argue that the "existence" and "reality" of MSBP has been "constructed" in the medical literature. Literature is often based on secondary rather than primary evidence, (as in the case of Rosenberg 1987) or it relies heavily on previous papers. Allison and Roberts (1998) refer to the "recursivity" of the literature, indicating that if enough papers speak about the existence of MSBP, then it is seen by the medical profession to be a reality. Additionally, the medical literature may include mistakes. For example, certain "expert" papers have been shown to include parents (as guilty of MSBP) who were"cleared" of MSBP before the papers were published. The epidemiology or statistics based on these papers would therefore be flawed. Also constructed is the persona of mothers as "dangerous" - they are dehumanised and referred to as "perpetrators" of "crimes". The literature is patronising and misogynist, with commodification of women a key element in the quest for "sales" of texts. MSBP is "romanticised" and "sensationalised" with texts displaying visual features of women "screaming" or out of control, or languishing, neurotic and hysterical in"Victorian-style".
| Unexplained medical problems | Assumes medical knowledge is finite |
| Knowledge of medical terminology | Fits all intelligent, concerned parents, informed by their doctors |
| Highly attentive parent | Any parent of sick child will be anxious |
| Neglectful parent | Schreier example: "parents having coffee" |
| Angry/hostile parent | Doctors don’t listen to parent, parent becomes hostile, interpreted as MSBP |
| Child gets better away from mother | Many illnesses spontaneously resolve. If child dies or becomes sicker this proves mother’s innocence. |
| Mother has suffered similar illnesses | Ignores genetics |
| History of allergies | Ignores current research and chemical sensitivities |
| Mother has marital difficulties, father absent | Fits many parents |
| Further calamities such as fire, accidents | Fits many families |
| Insatiable need for adulation as parent and public acknowledgment | Silences women from going to media |
| Networking with other mothers | Finding support for false accusations, means of silencing women |
At this stage of my paper, I am returning to my anthropological roots in order to understand what is happening to these women. Why have they been involved in processes so clearly prejudicial? I see the concept of ambiguity, as raised by Mary Douglas (1966) is significant in relation to MSBP and notions of danger. Shilling (1993:72-3) states that her work shows how ‘the social body constrains how the physical body is perceived and experienced’. According to Douglas, individuals of marginal status are attributed with danger and pollution. In this way, mothers of children with illness which has been difficult to diagnose, are "ambiguous", and therefore they are seen as threatening by the medical profession. Douglas suggests that the concept of "danger" has more recently been replaced with the more neutral term "risk", however I argue that in relation to MSBP there has been a resurgence of the concept of danger. Baldwin (1999) takes up the issue of danger, stating that there are two aspects of danger in relation to MSBP: the free-floating notion of danger in relation to the child’s safety, and the pathology of individuals. He states that these pervade the medical literature.
Foucault’s notion of "the dangerous individual" is of significance in relation to MSBP. He refers to the upsurge of a new mental illness in the 1830s, at the time psychiatry was seeking to establish itself as a science. This illness was "monomania", a one-off madness in an otherwise sane person which results in homicide. It was therefore an invisible form of insanity, and it occurred in the domestic setting. Psychiatrists were used as expert witnesses in courts to determine whether an individual suffered from this mental illness or not. The medical profession became protectors of "the public hygiene". However, this diagnosis could not be sustained and its diagnosis ceased around 1870 (Kritzman 1988:133). It can be seen that there are many parallels with the recent upsurge in accusations of MSBP. In particular, it is seen as an "invisible" illness. Schreier (1993) emphasises that these women are "imposturing", posing as sane, caring and articulate mothers. Caroline Knowles (1996) extends Foucauldian notions of the dangerous individual in her notion of the family as a site of danger from the late 1980s. It is no longer seen as a place of refuge.
Why then are the mothers accused, rather than the fathers? Aligned to this notion of ambiguous individuals as polluted, is the notion that women are regarded as polluted and threatening, rather than men. Turner (1987:85) states that "throughout history women’s bodies have been treated as especially threatening". The female body is a metaphor of social relations. It is no surprise then, that women are seen to be the "perpetrators" of this crime in 95% of cases (Schreier 1993:7). Additionally, women have historically been treated in a discriminatory way by the psychiatric professions (Pringle 1998, Pilgrim and Rogers 1993), which had its impetus in the concept of women and "hysteria". During the course of my research, I realised that the experiences of these women were similar to witchunts. Allison and Roberts (1998) also refer to these similarities and state that many of the signs and symptoms of witches were related to their power to cause strange behaviour in children. All the women stated that they were "doomed if they do" and "doomed if they don’t" in relation to the way their behaviour was interpreted. Baldwin (1999) refers to this as "double-binding". The insistence on the use of a "profile" and the fact that the women are simply not believed, means that it is impossible for them to fight this label of MSBP. How then, can women show that they are innocent?
THE NOTION OF "FALSE"
When we speak about the notion of "false" allegations of MSBP we are actually considering two issues. First, the diagnosis itself may not exist - it may be a social construct without scientific basis. So how can a parent prove their innocence of an entity which in effect does not exist? Second, as soon as the notion of "false" allegations is raised, the onus is to "prove" that the parent is innocent. Perhaps this needs to be reversed. How can the medical profession prove that a MSBP diagnosis is indeed positive? In my interaction with parents it generally became very clear that there was no concrete evidence for the MSBP allegation. Therefore, the MSBP allegation itself was never definitively established, it was based on what I regard as flimsy "probabilities" and the technique of "profiling". I spent many hours with these women, generally on a repeated number of occasions, over many months or years. I studied their documentation, much of which had been excluded from medical opinion or excluded from the court process. In other words, I have spent far more time with these mothers than the doctors making the diagnoses, and I have had access to all documentation. Additionally, I found that the mothers and fathers rarely erred in their stories. They did not contradict themselves and whenever I found it necessary to make "checks", these nearly always fell into place.
If we consider statistics in relation to reports of child abuse, in 1997 in the U.K. (govt statistics), there were 65,000 reports of alleged child abuse of which less than 25,000 were found to have sufficient substance for the children to be placed on the Child Protection Register. Similarly in the U.S. in the same year, there were 3 million reports of child abuse of which less than 900,000 had any substance according to U.S.A. Department of Health and Human Services (Pragnell: pers. comm). This means that approximately two-thirds of these child abuse reports have been unsubstantiated. In Australia, in the calendar year 1997/98, there were 110,200 notifications. Of these, 26,025 were found to be substantiated (Aust. Institute of Health and Welfare). This means that approximately three-quarters of child abuse reports in Australia were not substantiated. What is particularly sobering about these statistics is the fact that parents accused of MSBP face a triple jeopardy: the accusation itself, the emotional prejudice which comes with it (making it difficult to prove one’s innocence) and very often the withdrawal of medical treatment for their child.
Is there any indication of how many MSBP allegations are made and how many may be "false"? It is difficult to know, since clear records do not seem to be kept. For example, there is no "coding" for MSBP by the N.S.W. Department of Community Services. We do not know how many MSBP notifications are made, and how many are substantiated or not. However, we may look to the work of Eric Mart (1999)for some indications in this regard. He states that Factitious Disorder by Proxy is particularly prone to overdiagnosis and that rare disorders are very likely to be overdiagnosed. He states there is no concrete evidence to show that Factitious Disorder by Proxy is anything except rare. To suggest otherwise, according to Mart, is a bit like the familiar riddle "How many undiscovered islands are there in the Pacific Ocean?"
How do these accusations or suspicions occur? There appears to be a culture of what I refer to as "certainty of doubt of parents" in the medical and social worker professions. Parents may be fast-tracked along a "pathway of suspicion". Baldwin (1999) refers to "triggers" for such suspicions, such as custody disputes, medical disputes, and failure to diagnose an illness. Allegations, grounded in suspicion, are often based in emotion, and may even be quite illogical. The "certainty of doubt" assures the practitioner excessive confidence in his/her own abilities as a practitioner, sometimes culminating in medical and emotional abuse.
Examples of such confidence can easily be found. High-profile practitioners such as Prof. Southall seem to believe that they do not make mistakes in diagnosing MSBP (20/20 Lies, Lies and Diagnoses video clip). In fact, Southall states that he believes he makes mistakes in the opposite manner - missing further cases. A further example of this "certainty of doubt" of parents, and certainty about one’s own practitioner skills, is demonstrated by Baldwin (1999). He refers to a case where the parents were charged with MSBP. A post-mortem showed the daughter had died from a degenerative muscle disorder. Baldwin states that the paediatrician "refused to believe the post-mortem results, stating that if indeed it was that particular disorder, he would have found it". Such certainty leads to parents being pursued, even if found innocent in court. One parent, Deborah, referred to this as the "Rottweiler syndrome", where doctors pursue mothers, even internationally.
Similarly, there may be an assumption of "guilt". For example, the belief that the Cleveland Affair in the UK, exposed by social worker Charles Pragnell, was not scandalous, and that most of the parents were in fact guilty of sexual abuse. These views are held despite the fact that Pragnell’s findings were supported by the Butler-Sloss Inquiry (pers. com) and there is no definitive evidence to the contrary. Against such certainty, how does a parent prove their innocence? Diagnoses such as MSBP are "closed diagnoses" (Reid 1999), once they have been said about a parent, it is almost impossible to prove one’s innocence. Baldwin (1999) refers to this as a "trajectory" which the parent cannot unwind, even in the face of contradictory evidence.
How does the suspicion progress? I argue in my doctoral thesis that the process of suspicion occurs due to the dismissal of emotional distress of parents when their children are ill, and medical training for lack of compassion. My research data show the path of suspicion may involve the following steps: blaming parents and making hasty, ill-informed moral judgements, dismissal of clear organic symptoms, trivialisation of symptoms, withdrawal of care for the child and medical neglect, communication and listening difficulties, hasty diagnosis, blaming "the mind", patronising of parents, interpretation and misinterpretation presented as fact, judgements about family coping mechanisms, and recruitment drives of doctors into the MSBP diagnosis.
Despite such attitudes of certainty and suspicion, some practitioners such as Rand and Feldman (1999) are now acknowledging the possibility of false accusations. However, I argue that they erroneously cling to the idea that these mistakes are few and far between.
Despite the fact that most diagnoses of MSBP are highly subjective and based on flimsy evidence, practitioners believe strongly in the cases they diagnose. This means that medical practitioners set themselves up as the arbiters between the "real" cases and the ones that may have been "false". I would argue that perhaps most of them may be false and that medical practitioners may rarely diagnose "positive" cases accurately. This means that mothers who are "real" in Rand and Feldman’s view, but who may actually be innocent, will find it even more difficult to prove their innocence if MSBP is given scientific reification. In other words, in trying to highlight a few "false" diagnoses, the so-called "real" diagnoses are given heightened scientific credibility. Subjective diagnoses are made into "scientific fact".
RESISTANCE: "GOOD FAITH" AND "BAD FAITH"
The process of suspicion may not occur at all. In some cases the allegation of MSBP does not appear to be based in suspicion or certainty of doubt, rather it appears to be based on "retaliation" and "silencing". In essence, what we are speaking about here are "good faith" allegations versus "bad faith" allegations. However, a post-structuralist perspective would not dichotomise in this polarised manner . There may be a merging of "good faith" and "bad faith" at various times. How do women resist such a subjective "diagnosis"? Certainly resistance plays a definitive role when mothers believe that the allegations made against them are vexatious, or at least contain elements of "retaliation", as the mother progresses down the "trajectory" of the MSBP allegation. "Heather", in my case study, regarded herself as having been accused in a vexatious manner. She resisted her accusation vigorously and began to regard herself as the Australian version of Patty Ames in the U.K. In Patty’s case, it seemed as if she was projected along a "trajectory" which had its origins in a bitter custody dispute in the United States and which later developed "retaliatory" elements.
(at present parents have requested that this paragraph not be placed on the web)
RESISTANCE AND INVESTIGATIONS
Against almost overwhelming odds, many mothers have continued in their resistance against allegations. As well as fighting to regain custody of their own children, they have actively been involved in making sure that other women have been protected. The resistance of mothers against false allegations is a resistance based in emotion, refuting Foucauldian concepts of passivity and lack of resistance in the post-modern world. Foucault neglects to consider emotion, perhaps because his arguments are not based on primary research. Nearly all the mothers I spoke with who had been accused of MSBP were extremely assertive women who questioned doctors. A major proponent of MSBP in the U.S., Dr. Herbert Schreier (1993), states, "early on we recognised that these women were not wholly passive in their interactions with the medical profession"! Donald and Jureidini (1996) also show concern about the mother holding "the upper hand in the struggle to remain in control".
Recently, investigations into the practices of certain doctors and the diagnosis of MSBP have been instigated in a number of states and countries, spearheaded by women falsely accused and other interested parties. For example, in Australia I know of two investigative bodies who are proceeding with investigations after consideration of complaints from parents. However, the efficacy of these "investigations" is difficult to determine. The Public Interest Advocacy Centre in Sydney has also instigated an investigation into the diagnosis of MSBP and the process of notification to community services.
In the U.K., complaints about Prof. Southall and MSBP are being investigated by the independent Griffiths inquiry. These inquiries are considering some of the following issues: Diagnoses of MSBP; experiments with premature babies, and the use of a specific ventilator for premature babies. Prof. Southall has allegedly agreed to withdraw from current child protection work whilst the investigations are proceeding. The 20/20 video by reporter Genevieve Westcott highlighted difficulties with false allegations in the U.K and it now appears that 5 families have proceeded with legal action (Morgan:pers.comm). In the last few weeks, the Royal College of Paediatrics and Child Health (RCPCH) in the U.K. has recommended to its council that guidance should be issued to members on how to deal with people who are suspected of MSBP. The RCPCH which has conducted a detailed survey into the extent of diagnosed MSBP cases, say that because the condition is rare, doctors need help in identifying it correctly (BBC 1999). Additionally the British Medical Council has received complaints about false allegations of MSBP from at least ten parents and Staffordshire police are investigating parent complaints over "consent" to medical trials with premature babies.
Patty Ames has placed a complaint against a practitioner with a State Medical Board in the U.S., with mixed results, as has Ellen Storck. Patty Ames has also filed a complaint with the relevant State Attorney General. I have documentary evidence of one practitioner failing to appear in court as a witness. Other families in the U.S. have successfully sued doctors and community services, for example in the case of Angela Cochrane. A number of families are currently suing Vanderbilt hospital including the Patricks (owners of the M.A.M.A.website) and three families (Wise, Evans and Neeson) have apparently successfully won suits against UCLA hospital.
RESISTANCE AND PUNISHMENT
According to the parents I spoke with, there has been "retaliation" for bringing these issues to the attention of the public. For example, in the U.K., Ms. Penny Mellor, advocate of mothers falsely accused of MSBP and one of the researchers involved in U.K. investigations, has been arrested on two occasions, her computer and other documents being seized without warrant. Families involved in giving evidence in the Griffiths inquiry have also had their homes raided. Journalist Brian Morgan has been arrested and charged as an "accomplice in kidnapping" (pers. comm).
Other parents, not "activists", also spoke about the discriminating manner in which they were treated - the trajectory of doubt, certainty and suspicion leading to prejudicial and distressing outcomes for parents. Connections between MSBP allegations and punishment in the medical profession are raised by Allison and Roberts (1998:84). They refer to rapid cultural changes within the medical profession during the 100 year period between publication of Cheyne’s (1733) The English Malady and Gavin’s (1838) On the Feigned and Factitious Diseases. They suggest that British medicine became less tolerant of disorders that appeared to be fabricated. Allison and Roberts refer to Gavin’s text as the "official bible, the nascent DSM, of this newly punitive medical era". His text is seen by Allison and Roberts as allowing medicine’s primary concern of healing the sick to become one of detection and punishment (87). This punishment involved coercion, torture and terror in order to get a forced confession from the patient (90). The intense focus on "eliciting a confession" from MSBP mothers is similar to this process. The more the mother vehemently denies she is guilty, the more the medical profession insist that this is simply a symptom of her guilt and deception. How would an innocent person respond? The work of Foucault is insightful here. He illustrates increasing invisible surveillance in the post-modern world, highlighted in his text Discipline and Punish (1977). The Panopticon, an architectural design of a prison or hospital, illustrates this disciplinary form of power. Most parents I interviewed who had been accused or suspected spoke about both surveillance and deception in the process of their MSBP allegation. However, I would argue that Foucault’s disciplinary form of power is too sanitised a notion for the parents accused of MSBP. In reality, it is a form of "sovereign" power, where punishment is overt and public humiliation occurs. It is a form of "power" which is extremely difficult to resist.
If parents are harming their children, then a child needs to be protected. However, it is not ethical to hastily accuse parents, using non-transparent and unaccountable methods. It is not acceptable to simply state that this is "child abuse", which may somehow justify false allegations and deception. Every attempt must be made to protect parents from such situations. The MSBP "diagnosis" is questionable in regards to scientific validity, and is highly prejudicial to the mother. I argue that many accusations of MSBP are either false or highly questionable, causing grievous damage to families. I found that it was the data from the medical professions, rather than the parents, which did not hold up to intense scrutiny. I found that it was the behaviour and procedures of the professionals, rather than the families, which was unacceptable. As one mother, Rebecca, stated to me, about the doctors involved with her family, "it’s as if they aren’t even human".
* * * * *
1. Fundoplication - mobilisation of lower end of the esophagus and plication of the fundus of the stomach around it (fundic wrapping) in treatment of reflux esophagitis
2.Manometry - the measurement of pressure by a manometer
3. Whaley and Wong (1991) Nursing Care of Infants and Children pp1499-1501, Maurer, H. (ed) ?(1983) Paediatrics pp507-8, and Hutson, Beasley and Woodward (1992) pp 119-20
4. Nixon and O’Donnell (1992) The Essentials of Paediatric Surgery (pp119-122) insist that a wrap should be loose and for this reason a three quarter wrap is preferred by some surgeons.
5. Lavine, J Hattner, R and Heyman, M (1988) Dumping in Infancy Diagnosed by Radionuclide Gastric Emptying Technique in Journal of Pediatric Gastroenterology and Nutrition: 7:614-618.
6. Ibid , p614-618
7. Carvajal, S and Mulvihill, S (1994) Postgastrectomy Syndromes: Dumping and Diarrhea in Gastroenterology Clinics of North America Vol. 23 no. 2 June:261-271
8. Gastrostomy - surgical creation of an artificial opening into the stomach.
9. Lavine et al 1988 op cit, p615
10. Conelius et al. (1993) Octreotide: A Long Acting Somatostatin Analog in the Management of Post-operative Dumping Syndrome, Digestive Diseases and Sciences Vol. 38 No. 2 February p362
11. naso-jejunal tube - a tube is placed down the nose, through the stomach, duodenum and jejunum.
12. Carvajal, S and Mulvihill, S (1994) op cit p 262
13. scintigraphy - the production of 2 dimensional images of the distribution of radioactivity in tissues after the internal administration of radionuclide.
14. Phrase coined by Barbara Bryan
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