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FALSE ACCUSATIONS OF MUNCHAUSEN SYNDROME by PROXY

presented by Dr Helen Hayward-Brown.

This Newsletter written in 2002 was originally requested by a government agency but there has been no confirmation of publication.
For references please refer to the paper on False and Highly Questionable Allegations of Munchausen Syndrome by Proxy for the short list, or the PHD for the full list. Thankyou.

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Over the last ten years there has developed a disturbing trend where many mothers are being falsely accused of Munchausen Syndrome by Proxy (MSBP). This has been the subject of my recently completed doctoral thesis. Mothers whose children suffer illnesses which cannot be easily diagnosed are at risk of being accused, particularly in the hospital context. The prejudice of this label is so great that a mother's credibility is completely destroyed. Children are usually removed from their care, often without adequate investigation, and mothers are only allowed minimal supervised contact with their children.

My research entailed interviews, perusal of documentation in many cases, and fieldwork with parents whose children had suffered difficult to diagnose illnesses. I made MSBP the main focus of my work when I discovered that a number of parents had been falsely accused or had been accused in highly questionable circumstances. In a few cases I recognised that a parent may have been suspected of MSBP without realising it. When these parents undertook a Freedom of Information audit of hospital files, this was found to be the case. Other parents did not access their files but realised why they had been treated in a strange way by medical professionals. I investigated a number of families who had been accused/suspected of MSBP over approximately 4-5 years.

What is MSBP?

Briefly, MSBP purportedly involves a mother deliberately making her child sick. According to Schreier and Libow (1993), this occurs because the mother wants attention from medical professionals. They argue that 95% of perpetrators are mothers. These mothers, apparently, are 'not wholly passive in their interactions with the medical profession'. It is therefore no surprise to find that many of the mothers in my research who had been accused were assertive mothers who asked questions about their children's illnesses and medical management.

It should be noted that the MSBP diagnosis lacks scientific validity. It is not a definitive category in the DSM IV (1994), only appearing in the appendix. It is a recent and extremely controversial diagnosis (Allison and Roberts, 1998). Expert testimony is often unreliable and usually does not fit the criteria established in the U.S in Daubert v Merrell Dow Parm. Inc. Despite its highly controversial nature, MSBP is being used extensively in the medical profession, by social services, and in court.

Parents and professionals should be aware that there are many similar labels to MSBP, which include the following: somatisation disorder, abnormal illness behaviour, folie a deux, pervasive refusal syndrome, hysteria, and factitious illness. Often the MSBP label will be combined with other labels. For example, a mother may be accused of both MSBP and shaken baby syndrome.

Who is at Risk?

Any parent who visits a medical practitioner with a child who is suffering from an unusual illness, an illness which is difficult to diagnose, or an illness which is disputed within the medical profession, is at risk of an MSBP accusation. Additionally, any child who undergoes surgery which may not be successful, is also at risk of a MSBP allegation. For example, the surgical procedure of 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) is often a catalyst for a MSBP allegation.

This risk is multiplied many times if the parent takes the child to a specialist at a children's hospital. Generally the MSBP allegation will occur in the hospital context. The family practitioner and even the family paediatrician's opinion will be disregarded because they will be seen as 'colluding' with the parents. Therefore, doctors who know very little about the family and their medical history, and who have had very little first-hand contact with them, will make the MSBP allegation.

Parents of children with specific illnesses will particularly be at risk. In my research, which is continuing, the following illnesses caused MSBP allegations: epilepsy, gastro difficulties including reflux and bleeding from the bowel, chronic fatigue syndrome, neurological disorders, immune difficulties, pesticide poisoning, multiple chemical sensitivity, congenital/genetic disorders, apnoea, attention deficit disorder, tonsil inflammation, vaccination reactions and drug reactions (for example, Cisapride, commonly used in Autralia but now withdrawn in U.S. and U.K.). Parents of children who have been premature also appear to be gravely at risk. These children suffer problems which are poorly understood and which have only evolved in recent times, as more premature babies are kept alive. Another illness which may be misinterpreted by the medical profession is 'brittle bone disease'. Many of the above illnesses overlap in relation to symptoms and may be inter-related. For example, severe reflux is a symptom of chronic fatigue syndrome, as is ulceration of the throat, which is also indicative of immune difficulties. If more than one child suffers similar problems in a family, the parent is more likely to be accused. This is particularly the case with apnoea and sudden infant death syndrome.

The issue of cot death is complex. Recently, the UK Criminal Court of Appeal found that statistics used by Sir Roy Meadow in terms of cot deaths were erroneous and had contributed to the wrongful conviction of Sally Clark. Meadow's Law had stated that one death is a tragedy, two is suspicious and three is murder. Meadow stated that there was a one in one million, later changed to one in 73 million chance of two deaths occurring in the same family. In fact, Dr David Drucker has recently found a cot death gene and suggests the chances may be as high as one in four.

Mothers who are assertive and ask questions are at risk of being suspected/accused. In particular, parents who make complaints are in a very high risk category. Single mothers are at risk, as they have no spouse to support them, and are often in hospital alone with their children. Single mothers on low incomes cannot afford the legal defence needed in order to retain their children. They seem ill-equipped to sense danger, and unlike the 'middle-class' mothers I interviewed, did not take action fast enough e.g. leaving the hospital at the first sign of strange medical behaviour. Mothers who accused ex-husbands of sexual abuse may also find themselves accused of MSBP as a counter allegation in the family court. Recently, it has also been indicated by Ryan (2000) that parents of children with unusual names are also likely to be suspect.

Profiling of Mothers and Indicators of MSBP

In addition to the above risk factors, mothers are often 'profiled' as MSBP perpetrators. This means that any mother who fits into these categories is profiled as 'MSBP'. Since many of these categories contain paradoxes, it is impossible for the parent to prove their innocence. For example, an over-protective parent is part of the MSBP profile, but so is a negligent parent. The use of profiling is extremely prejudicial, inaccurate, paradoxical and often nonsensical. For example a number of mothers in my research were accused of being too familiar with hospital personnel because they called them by their first names. See table below for the difficulties I have identified for the different characteristics of a MSBP perpetrator.

from the british medical journal

A truly frightening letter appeared recently in the British Medical Journal. It did not warn of some new superbug or similar dangers. Rather, it gave evidence of how far the trust between doctor and parent, essential to the care of children, has been corrupted. What the letter, from some paediatricians in York, said was that parents who fabricate illness in their children also abuse the various NHS complaints systems.

Fabricating illness in children, also known as Munchausen's syndrome by proxy, is diagnosed increasingly often, not least because a small number of doctors seem now to assume that illness must be fabricated if they cannot reach an alternative diagnosis quickly. Consider the position of parents falsely accused, as an increasing number appear to have been, of causing illness in a child. If they say nothing, it is assumed they accept the diagnosis. If, as most parents would, they vehemently deny it, and go to the complaints system about the terrible doctor who would suggest such a thing, that is now to be taken also as a confirmation of the diagnosis.

This comes straight from the witchhunters' manual. Put your suspected witch in the ducking stool and hold her under water. If she survives, it can only be because she is a witch, so now she must be burnt at the stake. If she drowns, we cannot be certain whether she was a witch, but her death was for the greater good. In the same way that an accusation of witchcraft led inevitably to death, so an accusation of MSBP almost inevitably leads to the breaking up of a family.

It is impossible for families to fight because any and every aspect of their behaviour over a wide spectrum will be taken by some paediatricians as confirmation. One family that did fight were made to live - parents and child - in hospital for three months: the illness continued, with no evidence of fabrication while in hospital, yet still the doctors insisted they were right. Hunches, however ill-founded, become diagnoses, and most 'diagnostic' signs have never been validated.

What is needed, if some paediatricians are no longer capable of self criticism, is much more careful scrutiny by the Family Division courts. Too often judges accept medical statements quite uncritically - how else could we have had children taken into care because parents would not give them the MMR vaccine? The total secrecy surrounding family cases also needs review: it is now protecting doctors who think they always know better than parents, and not the children.

Guidelines for Suspecting and Identifying
Munchausen Syndrome by Proxy

NOTE: (Many "experts" seem to have different deviations of the below "symptoms.")

A child who has one or more medical problems that do not respond to treatment or that follow an unusual course that is persistent, puzzling and unexplained.

Comment: This characteristic with its many or's, would apply to anyone who has a medical syndrome. There are literally thousands of current syndromes with new ones being identified each year. Each child who fits into a syndrome has more than one medical problem! Until the syndrome is found to be matching others, it is bizarre, puzzling and persistent. Many of the syndromes do not have an identified gene and this can make diagnosis difficult.

Physical or laboratory findings that are highly unusual, discrepant with history, or physically or clinically impossible.

Comment: This is dependent on the interpretation of the doctor and his experience. The discrepancy in history may be due to the way in which the history was obtained and if the questions were asked in the same way as previous interviews. Also, a parent under stress might tend to exaggerate as a way of emphasizing their alarm.

A parent, usually the mother, who appears to be medically knowledgeable and/or fascinated with medical details and hospital gossip, appears to enjoy the hospital environment, and expresses interest in the details of other patients� problems.

Comment: Any concerned mother will take the initiative to learn as much as possible when faced with a child who is critically/chronically ill, especially if her child is yet undiagnosed. This is a hallmark of a concerned, advocating mother. On the other hand, if a mother has had a prolonged stay, it would be unusual for her not to connect with other parents as a means of mutual support and as a result share information about one another's children when that is the world they are living in. Also, there must be quite a few people interested in medical knowledge since the television is full of hit shows like "ER", "Chicago Hope", "Rescue 911", "Medical Detectives", -etc...

A highly attentive parent who is reluctant to leave her child�s side and who herself seems to require constant attention.

Comment: This is another characteristic that any good, loving and advocating mother would have. One would have to ask who is making the claim that the mother requires constant attention. Is it a disgruntled nurse or doctor? Any mother who is truly an advocate will always brush some of the medical staff the wrong way in her endeavor to make things better for her child.

A parent who appears to be unusually calm in the face of serious difficulties in her child�s medical course while being highly supportive and encouraging of the physician, or one who is angry, devalues staff, and demands further intervention, more procedures, second opinions, and transfers to other more sophisticated facilities.

Comment: Which is it? This characteristic describes a very broad array of emotion. Any mother who has spent much time in the hospital has learned that physicians are hesitant to discuss details if the mother seems emotionally unstable. Also, if a life-threatening event occurs, a mother may maintain a cool exterior, so as not to be escorted from the room. It is quickly learned, that to be an effective advocate, you must keep calm.

If the physician seems to care, the mother will feel gratitude and express it. There is nothing wrong with being ingratiating to a physician that shows compassion.

If a child continues to remain undiagnosed, both the mother and staff can become exasperated. A mother will become desperate and angry if she suspects that the physician has given up and the child is needlessly remaining in the hospital without a clue when things might improve. Also, there was a day when seeking second or third opinions was recommended by the finest physicians!

The suspected parent may work in the health care field herself or profess interest in a health-related job.

Comment: Countless people who work in the health care field! It is a known phenomenon that parents who have a child saved by medicine aspire to give back what was given to them. Also, the mother of a child, who has endured a lengthy stay, might wish to pursue a career in medicine as a way of feeling that her child's suffering resulted in something good. Certainly that she would have the ability to empathize with others.

The signs and symptoms of a child�s illness do not occur in the parent�s absence (hospitalization and careful monitoring may be necessary to establish this casual relationship).

Comment: It is obvious that a mother will notice things a nurse would not. A mother spends more than a single shift observing her child and so it is not uncommon that certain symptoms are better documented during a parent's presence. A doctor might see a patient for only 10 minutes per day. It depends on how "in tune" the observer is. Some symptoms naturally improve toward the end of the first year, just about the time a child is taken into "protective custody."

A family history of similar sibling illness or unexplained sibling illness or death.

Comment: A syndrome many times will affect parents and siblings. (either to a lesser or greater degree)

A parent with symptoms similar to her child�s own medical problems or an illness history that itself is puzzling and unusual.

Comment: As stated above, a syndrome might be present in the family. The same syndrome might have more prominent symptoms in the child and the parents might examine their own medical history in hopes of helping to find a diagnosis and speed their child's own cure.

A suspected parent with an emotionally distant relationship with her spouse; the spouse often fails to visit the patient and has little contact with physicians even when the child is hospitalized with serious illness.

Comment: A chronically/critically ill child is known to put stress on the best of marriages. It may appear to be a distant relationship, but the mother and father have very different roles during this time and each has a hard time identifying with the other's stresses. A father may be visiting on week-ends while the physicians are off. During the week he has all the responsibility of a single parent, trying to keep a household functioning. Someone has to keep things together! Also, it is a fact that very few fathers spend much time in an ICU dept. A father might fear breaking down in front of others or feel that he is protecting himself from deeper heartbreak, by not allowing himself to become too attached, worried that the child might die.

A parent who reports dramatic, negative events, such as house fires, burglaries, car accidents, that affect her and her family while her child is undergoing treatment.

Comment: When it rains it pours. Tragedy seems to come in waves and this is usually due to the fact that stress keeps parents from concentrating on things they normally would be conscientious of. Also, this is again very broad, depending on the length of an illness from months to years, many things can happen in that time.

A parent who seems to have an insatiable need for adulation or who makes self-serving efforts at public acknowledgement of her abilities.

Comment: Again, who is the observer? Who is interpreting the mother's actions? Do they have an agenda? Is the observer someone disgruntled by a mom who is a good advocate and was the critic simply brushed the wrong way? Maybe the observer is envious. Most mothers who have benefited by support groups and/or charitable foundations will be asked to help in some way, whether it be by speaking at fund-raisers or even allowing their kid to be a poster child. No one works harder in a cause than someone who has "been through it."

The above described characteristics are good characteristics which have been turned upside down and
backwards in order to pervert the loving actions of a mother for her child.