In 1977, Roy Meadow, a British pediatrician, published an account of two children whose symptoms had, for a time, baffled him. Initially, there seemed to be no similarity between the cases. Kay, a six-year-old, had what appeared to be a recurrent urinary-tract infection. In the course of consultations with sixteen doctors, she had been admitted to the hospital twelve times, catheterized, X-rayed, and treated unsuccessfully with eight different antibiotics. Charles, a fourteen-month-old, had suffered for more than a year with bouts of drowsiness and vomiting, which came on suddenly and without evident cause, and for which he, too, had been hospitalized on several occasions. He would arrive at the emergency room with weirdly high sodium levels in his blood, but his renal and endocrine systems showed no evidence of disease; as Meadow notes in his article, “between attacks, Charles was healthy and developing normally.”
Kay and Charles, it turned out, did have something in common. Kay’s mother had tampered with her daughter’s urine samples to make her appear to be ill when she wasn’t. Charles’s mother made him sick by feeding him high doses of salt.
Meadow gave this previously unrecognized form of child abuse a name: Munchausen syndrome by proxy, for the eighteenth-century German baron who was infamous for telling tall tales. Doctors had already identified a Munchausen syndrome, which referred to patients who feign illness or harm themselves in order to secure attention and sympathy—unlike malingerers, whose fakery is motivated by material gain (receiving a disability check, staying home from work).
Meadow’s landmark article, “Munchausen Syndrome by Proxy: The Hinterland of Child Abuse,” which was published in The Lancet, is a brief, discomfited piece of writing. He clearly finds it awkward to tell physicians that they might be complicit in a form of child abuse, particularly if they order unnecessary, painful medical procedures. He cannot decide whether it is problematic for parents to be allowed to remain at the bedsides of their hospitalized children, knowing that in some cases they might do harm. His explanation for the mothers’ behavior is modest, and does not try to resolve apparent contradictions. Shortly after telling his readers that Charles ultimately died from salt poisoning—an autopsy revealed gastric erosions, “as if a chemical had been ingested”—he remarks, without apparent irony, that Charles’s poisoner was a “caring, home-minded mother.” Indeed, both mothers “were pleasant people to deal with, cooperative and appreciative of good medical care, which encouraged us to try all the harder.” He adds, “Some mothers who choose to stay in hospital with their child remain on the ward slightly uneasy, overtly bored, or aggressive. These two flourished there as if they belonged, and thrived on the attention that staff gave to them.”
Meadow’s deliberately tentative conclusion is that Munchausen mothers “were using the children to get themselves into the sheltered environment of a children’s ward surrounded by friendly staff.” He leaves as an open question whether the disorder was unknown because it was so rare or simply because it lacked a name.
By defining two instances of abuse as a syndrome, Meadow made a significant diagnostic leap. Since then, a number of writers on the subject have taken an even bigger and more questionable leap: they have turned a bizarre and uncommon form of child abuse into a distinct psychiatric disorder, with its own checklist of symptoms identifying mothers who suffer from it. By now, Munchausen syndrome by proxy, or M.S.B.P., has generated a substantial body of literature—more than four hundred journal articles, and numerous books and essay collections. The D.S.M. IV, the latest edition of the American Psychiatric Association’s guide to diagnoses, includes an entry on the syndrome, under the name “factitious disorder by proxy.”
After Meadow, the physician who has perhaps done the most to draw attention to the syndrome is David Southall, who practices at a hospital in Stoke-on-Trent, England. In the nineteen-nineties, he pioneered the use of covert video surveillance to catch M.S.B.P. abuse in hospital rooms. Other researchers adopted this controversial investigative technique, and British and American TV have broadcast some of these images: blurry black-and-white clips of mothers smothering their babies, who struggle against pillows; a mother disconnecting her daughter’s oxygen tube; another jamming her fingers down her baby’s throat. These women seemed intent on creating a facsimile of breathing disturbances sometimes associated with sudden infant death syndrome, and counted on a doctor’s subsequently reviving their children—an appalling gamble. The thirty-nine abused children in Southall’s original study had forty-two siblings, twelve of whom were found to have died unexpectedly. Confronted with the video evidence, four mothers admitted to having suffocated eight of the siblings.
In recent years, Munchausen by proxy has seeped into popular culture, with a rapidity and a fervency that recall the fascination with child sexual abuse in the nineteen-eighties. In the 1999 film “The Sixth Sense,” Haley Joel Osment’s character discovers that a child has secretly been poisoned to death by her mother. In 2002, Eminem had a hit single, “Cleaning Out My Closet,” which contains the lyrics “Going through public housing systems / victim of Munchausen syndrome / My whole life I was made to believe I was sick when I wasn’t.” Last fall, Bantam published “Sickened,” by Julie Gregory, the first memoir by a victim of Munchausen abuse—an Ohio gothic featuring a viperish mother, high on the fumes of medical melodrama, who pretends that her daughter suffers from a mysterious heart condition.
Paid experts now regularly testify in court about the syndrome and conduct workshops for law-enforcement officials and social workers. Web sites publicizing the disorder offer checklists and warning signs. And, lately, mothers of chronically ill kids nervously joke—or openly worry—about being accused of the disorder. It is the “omnipresent phantom which lurks around every mother of a child where illness is difficult to diagnose,” Helen Hayward-Brown, an Australian medical anthropologist who has studied allegations of Munchausen abuse, has written.
That might sound hyperbolic, were it not for the fact that many M.S.B.P. experts advocate for a high level of distrust toward mothers. The editors of a 2000 book, “Munchausen Syndrome by Proxy Abuse: A Practical Approach,” warn doctors that “factitious illness should be considered in any unresolved clinical problems in childhood.” Mary Eminson, one of the editors, detects new temptation for mothers in the fact that “medicines are more powerful, operations more heroic, and opportunities for intimate access to children’s bloodstreams (through drips or central lines), to their gastrointestinal tracts (through gastrostomy buttons and other stomas and feeding tubes), to their renal tracts (through catheters and urinary diversions) and to their respiratory systems (through tracheotomies and ventilators) are more extensive than at any time in our history.” The book repeatedly invokes the dangers inherent in trusting patients—after all, a few do turn out to be malignant fabulists. As the introductory essay explains, “We have to come to terms with the fact that the implicit trust expected on either side of a medical engagement may very well be misplaced.”
This call for doctors who treat children to become hypervigilant for signs of Munchausen by proxy is more than a little odd, for the syndrome is, by most estimates, a rare thing. Most experts agree that there are probably about twelve hundred cases of M.S.B.P. a year in this country, from which perhaps a hundred deaths result. Donna Rosenberg, an assistant professor of pediatrics at the University of Colorado, said that, in fourteen years as a forensic pediatrician with the Colorado Child Fatality Review Committee, she saw about one death a year from M.S.B.P. In a 1990 study of 20,090 babies monitored for sleep apnea, the authors suspected—though they did not prove—that fifty-four cases, or 0.27 per cent, were related to the syndrome.
These numbers suggest that M.S.B.P., though horrifying, is far less common than other forms of child abuse. (There are about two hundred and fifty thousand confirmed cases of physical child abuse each year.) And it is also rare in relation to genuine chronic illness in children, at a time when kids are surviving with diabetes, asthma, renal disease, leukemia, and cystic fibrosis. Some Munchausen experts argue that cases regularly go unrecognized. Yet, given the rising awareness of the disorder among doctors, nurses, social workers, school personnel, and angry former spouses with access to the Internet—accusations are now being made in custody battles—it is not surprising that a different problem has begun to emerge: false allegations.
On a chilly afternoon in March, 2002, two caseworkers from the Children’s Aid Society in Ottawa arrived at the home of Nicola and Eurico de Sousa and their eight-year-old daughter, Katerina. They said they had received a report of Munchausen abuse: someone at the Children’s Hospital of Eastern Ontario, where Katerina had been treated off and on, was concerned that Nicola was subjecting her daughter to unnecessary medical interventions, including surgery. This was, on the face of it, a peculiar accusation, considering that Katerina had been born with a welter of serious congenital defects that affected her spine and liver.
Nicola de Sousa, who is forty-five, is thin, fair-skinned, and fragile-looking, with long blond hair and eyes as shimmery blue as a porcelain doll’s. She has a fine-grained memory for medical details, and comes across as articulate and high-strung. Eurico, who is forty-three, has a brushy mustache and a genial manner. They are both nature lovers and introverts, who find hiking more rejuvenating when they don’t meet too many people along the way. Throughout Katerina’s life, they have worked as a team—Eurico, who is a systems analyst at the Bank of Canada, did research on the Internet and prepared long lists of questions for Katerina’s doctors; Nicola took her to most of her medical appointments.
The investigation, however, focussed on one parent: Nicola. In an affidavit, Ned Jackson, a caseworker who interviewed her, noted that she “suffered from depression from the ages of sixteen to twenty” and “was presently being treated for depression by her family physician.” Nicola didn’t work, though she is bright and comes from a family of academics. She volunteered regularly at her daughter’s school; according to the affidavit, Katerina’s third-grade teacher found her to be overly demanding, and her “presence in class to be disruptive.” Another caseworker reported that Katerina was “tremendously meshed with her mother; father appears to play a more passive role.” But Jackson’s affidavit offered perhaps the main reason that the investigation had centered on Nicola instead of on Eurico: “Most M.S.B.P. offenders are mothers of the victim.” If Katerina was being harmed by unnecessary medical procedures, her mother was, by definition, the prime suspect.
When the caseworkers visited the de Sousas’ town house, Katerina was in the bath and Nicola, who could hear her singing from downstairs, was cooking spaghetti sauce. The caseworkers asked Nicola detailed questions about Katerina’s tangled medical history; Nicola dug out files to prove that certain procedures had been necessary. They wanted to talk to Katerina alone, so Nicola got her out of the bath and waited upstairs. “I did not want to leave her alone with them,” she recalled. “They said I had to—I had no choice. I was terrified they’d take her out the front door without my having a chance to apprehend them.”
Nicola had been homeschooling her daughter in the afternoons; she had found that when Katerina sat upright for hours it often caused pain in her defective spine. The two caseworkers asked Katerina to show them how she and her schoolmate Victoria liked to play kitties by crawling on the floor; they told her that if she could do that she didn’t need to come home from school early. The caseworkers also asked about the family’s sleeping arrangements—Nicola often slept in Katerina’s room because Eurico has an “earth-shattering snore,” and because Katerina sometimes needed her during the night. “My heart was pounding to the point I could hear it resonating in my ears,” Nicola recalled. “All I could think about was how I could stop them from taking her away.”
Several months later, Ned Jackson wrote up his affidavit—a bill of particulars urging a family-court judge to place Katerina under a “six month supervision order.” After meeting Nicola twice, he had arrived at a scathing assessment of her. He concluded that although Katerina did have congenital problems, she “may have been subjected to invasive and unnecessary surgical procedures and medical tests, as a result of what appears to be Mrs. de Sousa’s insatiable need for attention from medical practitioners, family members, the community.” The battle for Katerina had begun—a battle that was, in large part, about how much mothering was too much, and about the suspicions that an assertive and anxious parent can arouse.
How it is that Nicola de Sousa came to be lumped together with the terrifying mothers whom Roy Meadow wrote about, and whom David Southall videotaped, is both complicated and disturbing. Over the years, psychologists have steadily loosened the narrow definition of an arcane syndrome—a phenomenon known as “definitional creep.” In an effort to prevent Munchausen abuse by drawing up a standard portrait of the perpetrator, they fashioned a profile that was broad enough to cast suspicion on many mothers whose children were genuinely ill. Not coincidentally, the M.S.B.P. diagnosis flowered at a moment when fretful overparenting was becoming common in the West; psychologists began to worry that some expressions of anxiously attentive mothering might be unhealthy—or even pathological.
M.S.B.P.’s trajectory from scattered case studies to mainstream diagnosis is in some ways typical for a newly recognized disorder. Like attention deficit disorder, shyness disorder, and bipolarity, the syndrome has often been presented by rhetorical fiat as something that is surely underreported, and about which a silence prevails—even as it becomes increasingly well known. Unlike most other syndromes, however, M.S.B.P. has been canonized without being subjected to controlled, empirical studies. Eric Mart, a forensic psychologist in Manchester, New Hampshire, writes that the literature is almost exclusively “based on the experiences of physicians and psychologists in diagnosing or treating the disorder,” and lacks “well-defined criteria for determining what is and what is not a case of M.S.B.P.”
None of this is to say that M.S.B.P. is a figment of the medical profession’s imagination. In England, where three mothers accused or convicted of infanticide on the basis of testimony by Roy Meadow have had their cases overturned in the past five years, there has been an outsized backlash against the diagnosis. Articles in the British press railed against Meadow’s rule of thumb that a second crib death in a family was suspicious, and a third was murder, unless proven otherwise. (In the overturned convictions, the British appeals court suggested that genetic factors might explain the incidence of multiple infant deaths in some families.) The British government has ordered reviews of hundreds of cases in which parents were accused of killing their children. Many of these cases involve accusations of M.S.B.P., and if even one of them is found to have been false it will be troubling. But recent press accounts in Britain casually refer to M.S.B.P. as a “discredited” diagnosis—as though the issue weren’t whether people had been falsely accused but whether the syndrome itself was real. Those who need reminding that it is might look to the case of Maxine Robinson, one of the first cases to be reviewed. At a hearing in April, Robinson confessed that she had killed three of her children.
The larger question, then, is whether M.S.B.P. is best thought of as a disorder or simply as a criminal act. People who rob banks aren’t usually called victims of “bank robber’s syndrome,” after all, and parents who beat their children are simply called child abusers. And nobody assumes that these wrongdoers are all driven by the same set of motives—let alone by a discrete mental illness.
One of the primary aims of psychologists and pediatricians who first defined M.S.B.P. was to ascertain a motive for such perverse behavior. In a 1994 article for the Journal of the Royal College of Physicians of London, Roy Meadow abandoned his initial circumspection in favor of something like the deep-dyed specificity of the short story: “The perpetrating mother is commonly an alert, intelligent, and socially more aware person than her rather feeble, unenterprising husband. Alternatively, she is a worried, inadequate woman with a dependent personality, and has a particularly ‘macho’ partner who spends the evening in front of the television, reading Gun Weekly, whilst his wife cooks offal for his Alsatian dog.” Meadow noted, “Sharing an ill child with your partner may be better than sharing nothing.” A woman who tends to a child with a “rare” illness attracts sympathy and attention and admiration from friends and relatives, feels a sense of purpose, and gains temporary residence in the hospital ward—a comforting world where the clamorous demands of other children are held at bay with the best of excuses. “A pediatric unit is a disguised mental health facility . . . and rather more acceptable than one with an alternative title,” Meadow wrote.
The same year, two Americans—Herbert Schreier, a psychiatrist at the Children’s Hospital and Research Center at Oakland, and Judith Libow, a psychologist there—published a book, “Hurting for Love,” that has become perhaps the most influential meditation on the Munchausen mother. Schreier and Libow described the syndrome as something that has broad and familiar social determinants. For some women, Schreier and Libow argued, concocting fake afflictions for their children was a way to break out of the “tragically limited” role of “devoted caretaker”: “The unusual and damaging role that some women eventually embrace for themselves by means of medical fabrication offers them an opportunity to obtain ‘power’ over physicians and gain entry into an exciting social world without threat to their ‘perfect mother’ status.” In this view, the child was a fetish offered up by Munchausen mothers so that they might keep alive a relationship with an idealized authority figure, or, as Schreier and Libow put it, “to entice and simultaneously control their powerful, professional victims.” M.S.B.P. was framed in psychiatric terms, as a “female perversion” in which the perpetrator “feels a sense of elation when brazenly defying the moral order.” In fact, the authors suggest, the disorder “may be a gender-related form of psychopathy.”
The book was published to acclaim; the social dynamics it described, however, were from an earlier era. Schreier and Libow depicted a world in which “isolated women in rapidly expanding suburbs” were in thrall to fantasies of all-powerful male doctors—fantasies fed by soap operas and sixties shows like “Dr. Kildare.” But by the nineties women had entered medicine in record numbers; TV depictions of doctors had become cynical; patients had become stroppy, self-taught medical consumers; and the realities of managed care made Schreier and Libow’s depiction of a pediatrician lavishing special attention on a mother and her child seem quaint. Furthermore, the quasi-feminist context in which the authors placed M.S.B.P.—frustrated, smart women looking to exercise their thwarted ambition in socially acceptable ways—was both dated and facile.
By the mid-nineties, clinicians in the United States, Britain, and Canada had begun to disseminate a psychological profile, a set of suspect traits, of the Munchausen mother. According to various journal articles on the subject, a perpetrator was “masterful in the world of deceit, because she gains the support of the nursing and medical staff, who view her as a dedicated, committed, loving, and caring mother.” She might call doctors and nurses by their first names, or bring them cookies. She was familiar with medical terminology, and knew complex details of her child’s case. She might “solicit and encourage diagnostic procedures,” and be calm in the face of them. She might have worked in the medical field at one time, or wanted to. Typically, she was married, and her husband was inclined to leave medical decisions to her. When she was asked about her child’s illness, she appeared to be “tearfully frustrated with the chronic nature of the condition.” She was reluctant to leave the sick child’s side; her constant hovering made her, in the words of one expert, a “helicopter mother.” She was likely to be “overinvolved” and “overprotective” of the child, and would “tend to him as if he were younger.” The Munchausen mother was prone to bond with other parents of sick children on the ward. She was, in sum, “obsessed with the child’s illness.”
Profiles can be useful, but they are rarely predictive. (Most anti-American terrorists may be young Arab men, but few young Arab men are terrorists.) And in this case the profile was especially unhelpful. The relatively few clinical assessments that had been made of Munchausen mothers indicated that the perpetrators were not nearly as similar as the profile suggested. Some showed a high incidence of depression or a likelihood of having been abused as children; some did not. A few studies reported that the mothers had a history of psychosomatic illnesses; others equivocated. Some showed a high preponderance of personality disorders, but this was clearly an insufficient explanation, since most mothers with personality disorders do not harm their children in this way.
One particularly dubious element of the standard M.S.B.P. profile, which was published in such periodicals as the Journal of Mental Health Counseling and Archives of Disease in Childhood, was its assertion that perpetrators were “deniers” who would firmly deflect accusations of abuse. This placed accused mothers in an absurd bind. “The ‘perpetrator’ may genuinely be innocent and that is why she persistently and vehemently denies harming her child,” C. J. Morley, who is now a professor of pediatrics at Royal Women’s Hospital in Melbourne, Australia, wrote in 1995. “In some cases the mothers are told if they do not confess they are unlikely to have their children back. This is blackmail and may result in a false confession.”
Many of the profile’s other supposed warning signs—familiarity with a child’s medical history; a protective relationship with a chronically sick child—are actually signs of good parenting, as studies have confirmed. In one survey of parents with sick children, subjects were asked to list helpful things that hospital staff could do for them; the most important was “being allowed to stay with my child as much as possible.” A study comparing paternal and maternal styles of coping with a child’s chronic illness noted that “mothers tend to use contact with the medical team treating the child as a coping behavior more frequently than fathers,” and feel more personally responsible than fathers for a child’s therapeutic needs. Furthermore, parental attitudes that might seem worrisome if a child is healthy—overprotectiveness, a tendency to treat the sick child as if he were younger than he is—can be functional if the child is chronically ill.
Indeed, habits characterized as “abnormal parental health-seeking behaviors” by Munchausen experts can appear unremarkable in this age of widespread parental anxiety. Middle-class parents tend to be exquisitely aware of health and safety issues, and often micromanage their children’s lives in order to fend off a buzzing pack of threats. (Tainted vaccines! Stranger danger! Playground hazards!) David Anderegg, a psychologist at Bennington, argues, in “Worried All the Time” (2003), that this is in part because safety innovations like childproof bottles and bicycle helmets can actually make us more uneasy by reminding us of the threats they were designed to avert. Moreover, the one-child family is increasingly becoming the norm in the West, and these families are characterized, in Anderegg’s words, by “high parental investment”; first-time parents tend to worry the most.
Perhaps it was inevitable that some expressions of fretful child-rearing would eventually be cordoned off and declared a syndrome, if only to distinguish them from what the rest of us do all the time. Just as, in the nineteen-eighties, satanic ritual abuse represented the worst fears of what could happen in day care, so M.S.B.P. has come to represent the danger posed by mothers who are excessively involved with their children.
The notion that mothers can love and protect their children too much is not new. In Puritan New England, ministers warned mothers not to attach themselves too fondly or mourn their children too fiercely. A beloved child’s death was not something to resist; it was something to accept, graciously, as God’s will. Thus Increase Mather inveighed against a mother who had “doted” on her son and, when “the lovely youth fell ill of small pox,” vowed not to let it take him. It was her “unruly passion,” Mather chided, that kept her from taking the counsel of her ministers to accept whatever God decided for the boy—and she was duly punished for her excessive love when she died during the birth of her next child.
In “A Potent Spell: Mother Love and the Power of Fear” (2003), Janna Malamud Smith, a psychotherapist, chronicles the ways in which maternal anxiety, and even maternal doting, have been denounced for centuries—first because the unruly passion of mother love could render a woman insufficiently submissive to God (and to men of God), and later because it could lead her to defy the advice of male doctors. In the nineteen-twenties, the behaviorist John Watson railed against sentimental mothers who destroyed their children’s character by coddling them—which, in his view, included hugging them. David Levy, a child psychiatrist in New York, coined the term “maternal overprotection” and published a book about this menace in 1943. It was a sickness “well portrayed,” Levy wrote, “by a mother who holds her child tightly with one hand and makes the gesture of pushing away the rest of the world with the other.” Some of Levy’s colleagues preferred the term “octopus mother,” with its intimations of slimy engulfment. Pop psychology of the fifties blamed “smother love” for breeding mama’s boys, homosexuals, and Communists.
By contrast, the anxious dad is more a figure of fun than of menace—like Marlin, the fin-wringing clownfish papa in “Finding Nemo.” And, in any case, fathers make far fewer appearances in psychiatric literature than do mothers. Smith writes, “It is remarkable that a professional discipline could assume so casually the right to assess stringently the unconscious minds” of women, “and use pseudoscientific yet exacting calipers to measure the way those mothers fail at love.”
Nicola de Sousa gave birth to Katerina on July 19, 1993. The delivery was normal, but when Katerina was two days old Nicola and Eurico noticed a bruiselike mark on her arm. Nicola remembers thinking that it looked as if someone had accidentally smacked the baby’s arm. But the mark got bigger, and the de Sousas soon noticed similar ones on their daughter’s chest and scalp. Her belly seemed to be swollen, too.
In August, an ultrasound revealed that Katerina had large hemangiomas on her liver. Hemangiomas are benign tumors made up of clustered blood vessels, and in their most common manifestations—as discolored swellings on the skin—they are harmless. However, in rare cases hemangiomas can crop up in the brain, the airways, or the liver; these can cause heart failure, because the infant’s heart must work especially hard to shunt blood through the densely bunched vessels.
Katerina was admitted to the Children’s Hospital of Eastern Ontario. The de Sousas say that a pediatrician told them that she was likely to die; a letter from this doctor in Katerina’s file states that “the baby has attacks of pallor for a few minutes, when she turns purple under the eyes. . . . The heart sounds were rapid. . . . I’m really concerned.” The cardiologist who examined Katerina during her hospital stay, however, was optimistic, and reported, in another letter contained in her file, that “from the cardiac standpoint, I think the baby should do fine.” He did not think it would be necessary to see her again.
The de Sousas were confused. Katerina was being treated with high-dose steroids, but the hemangiomas on her liver were still growing, and she seemed to be getting worse. She sweated when she nursed, which can be an indication of congestive heart failure, and her belly remained distended by an enlarged liver. They also felt that their worries were not being taken seriously by their doctors. Nicola was infuriated when a dermatologist she had consulted about Katerina told her that she was being a “neurotic mother.”
Meanwhile, Nicola and Eurico began researching treatments for Katerina’s condition. They learned about an experimental protocol in which interferon was used to slow the growth of tumors by switching off their blood supply. The study was taking place at Children’s Hospital in Boston, and was conducted by Judah Folkman, the renowned cancer researcher. (This early work on hemangiomas in children was a crucial step in the development of angiogenesis inhibitors, which are promising new cancer drugs.) Nicola called Folkman’s office, and his nurse told her that Katerina could receive immediate treatment. When Nicola reported back to Eurico, he said, “Let’s do it.” But she was apprehensive. Under Canada’s health-care system, all citizens are insured, but the waiting lists for specialized procedures can be long. In Boston, the doctors were eager to act immediately. If the experimental therapy worked, this haste would be justified; if it didn’t, Nicola would feel that they had taken a foolish risk.
Nicola had liked Folkman’s nurse, so she called her back and asked whether she would enroll her own child in the study. The nurse said that she would. Within a week, the de Sousas were on their way to Boston; within another week they had brought Katerina home and were giving her interferon shots themselves. Six months later, the tumors had shrunk substantially; after fifteen months, they were gone.
When Katerina had initially been evaluated in Canada, none of the medical reports said that she was experiencing congestive heart failure—only that she “might be on the verge of cardiac decompensation.” Ned Jackson, the caseworker, expresses alarm over this apparent discrepancy in his affidavit: “Mrs. de Sousa has maintained this version of events throughout Katerina’s life, despite the fact that cardiac testing performed on Katerina when she was an infant produced normal results, and that her treating physicians concluded that there was no evidence of congestive heart failure.” But when I spoke with Folkman this spring he said that when he saw Katerina she had indeed been in congestive heart failure. He added, “The interferon alpha saved Katerina’s life.”
The decision to seek experimental treatment was, as Folkman put it, a “triumph” for Katerina’s parents. The de Sousas, for their part, began to think of the American medical system as more responsive than the Canadian system. Some of the de Sousas’ Canadian doctors, however, thought they were seeking care in the States unnecessarily and habitually—almost addictively.
Suspicion began to build, against Nicola in particular. Even some of the doctors who supported the de Sousas’ medical decisions felt that Nicola was unusually persistent, and that the trauma of having a child who was gravely ill as an infant had made a nervous temperament more so. On one occasion, when Nicola took Katerina in for a checkup, the chart noted that “mom is very anxious, tired, and not getting enough sleep.” The account of another visit is more overtly disapproving: “Child is in hospital, monitor is going off, but then correcting itself immediately, mom becoming increasingly upset with disturbances, mom became angry when alarm rang and insisted on taking baby home, mom signed refusal of treatment form and left hospital—she stayed overnight at crib despite doctor saying that child was fine.”
In 1999, the psychiatrists Marc D. Feldman and Deirdre C. Rand published a report in the Harvard Review of Psychiatry describing several cases in which the M.S.B.P. profile had led to false allegations. In one, the mother of an eighteen-month-old boy had brought him to the doctor for recurrent infections. She was labelled an M.S.B.P. perpetrator partly because her child’s illness was recalcitrant, but also because of the way hospital staff judged her demeanor. She was seen as “unusually attached” to her infant, and her insistence on being present when tests were performed was interpreted as “eagerness to see pain inflicted.” Her use of medical jargon conveyed an “unhealthy interest” in her son’s condition. The boy was placed under surveillance, and the mother was allowed to visit only under supervision. (The staff noted that the “mother is very resentful.”) Nonetheless, the child got worse, and he ultimately received a diagnosis of Kostmann’s syndrome, an immune-deficiency disorder. Feldman and Rand note, “The physician who entered the provisional M.S.B.P. diagnosis declined the mother’s request to refute it explicitly” on the updated medical chart, saying that “she was still ‘a possible M.S.B.P. perpetrator’ who might engage in M.S.B.P. abuse in the future.”
In systematic studies of the M.S.B.P. profile, its predictive value has not held up well. A 2000 study conducted at a children’s hospital in Atlanta, employing covert video and audio surveillance, concluded that the profile had not helped identify which mothers would turn out to be guilty: “While many of the families fit the usual stereotypes of M.S.B.P. . . . we were unable to predict the certainty of diagnosis using these factors.” Fewer than half of the twenty-three mothers whom video surveillance proved to be abusers had read medical journals or had seemed, according to the staff, to be particularly close to doctors or nurses.
Leading authorities on M.S.B.P. have begun to acknowledge that the profile is flawed. “Some non-experts have been sloppy in their thinking,” Randell Alexander, the director of the Division of Child Protection and Forensic Pediatrics at the University of Florida College of Medicine, in Jacksonville, said. “They’ve jumped at some aspect of a person’s behavior or personality and said that shows she did it.” Donna Rosenberg, of the University of Colorado, told me that researchers’ focus on intention was misguided. “I haven’t the foggiest idea how one penetrates motivation,” she said. “There’s a reason our skulls are soundproof.” Marc Feldman, who argues that it’s not useful to think of M.S.B.P. as a psychiatric disorder, also opposes profiles. “I don’t think there are any personal characteristics that define a potential perpetrator,” he said.
Despite such critiques, the profile has continued to gain mainstream acceptance. The checklist has been published in the F.B.I. Law Enforcement Bulletin, in various newspaper articles, and in a number of publications for nurses—in which the suspect traits are listed, often without disclaimers. The profile also continues to carry weight in the judicial system; in cases in which there is very little evidence of a mother’s having harmed a child, it can keep the accusation alive. Eric Mart, the forensic psychologist, told me that in courtrooms, where he often testifies as an expert witness for the defense, “they’re treating these things as probative when they’re not.” He went on, “What’s the average amount of time someone spends at a child’s bedside? That’s used as an exemplar. The courts think a lot of visits to the doctor, the mother used to work in a pharmacy, the child had asthma as a kid but it was never really clear what was going on—we’ve got a case of Munchausen.”
A few months ago, I met a woman on whose behalf Mart recently testified as an expert witness. Heather, who asked that I use only her first name, is thirty-six and lives in New Jersey, in a pretty condominium where the baby’s room has a basket of board books on the floor and antique prints of mice on the walls. She is an operating-room nurse who put herself through nursing school by working as a bartender at night. It’s easy to imagine her in both roles: she is warm, brassy, and efficient.
In April, 2003, she gave birth to a boy, just as she and her husband, an electrician, were on the verge of breaking up. Soon after his birth, Heather’s baby was given a diagnosis of acid reflux, and twice, when she thought he was choking, she called 911. According to a pediatrician who attended to the child, Heather’s husband thought she was making a fuss over nothing, and on the second visit to the emergency room he told the attending doctor, “I think she may be hurting the baby.” A physician is required by law to report credible suspicions of abuse, and the doctor called child-protective services.
The two incidents involving reflux, and a visit Heather made to a urologist to consult about adhesions she had noticed on the baby’s foreskin, were the only medical inquiries she had made that were not routine. Nonetheless, Heather fit the profile: she was a nurse; she had a good store of medical knowledge, which she was not shy about sharing; she was a worrier; and she was crazy about her baby.
As a result of the investigation, the child was placed with Heather’s in-laws, with whom she did not get along. She was allowed to see her baby for two supervised visits each week. During these visits, Heather was not allowed to give any food or liquid to the baby—if she really was a Munchausen mom, she might try to poison him.
The state’s investigation dragged on for six months, as a family-court judge held hearings on the dispute. The gastroenterologist who treated the baby did not think Heather suffered from M.S.B.P. He thought that she might have overreacted, but that such overreactions were common among new parents. (Heather herself acknowledged as much—the divorce had been stressful.) The urologist, too, agreed that Heather’s inquiry was appropriate, and confirmed that the baby had redundant foreskin. In January, the judge dismissed the allegation against Heather, and her son was returned to her. Heather’s stepfather, Tom, who, along with her mother, had accompanied her to court and helped pay for her defense, sent an e-mail to family and friends: “Lawyer’s fees—$25,000 plus. Dr. Mart—$7,000. Dr. Annie—$5,000. Sitting on the couch with a smiling, laughing baby boy—priceless.”
When I visited Heather on a wet, gray afternoon recently, she was padding around in a cardigan and socks. She served Tom and me a lunch of homemade lasagna and cooed at her son, who sat in his high chair, pink-cheeked and wriggly. “Hi, handsome!” she said brightly, kissing him on his head and offering him a teething biscuit.
She said that she felt lucky to have her baby back, yet she was furious to have “lost six months of his life.” The false accusation, she said, made her feel “like I was being swept out into a riptide. In the beginning, I just kept thinking, These are professionals; they’ll figure it out. I’ll have him back in a few days. And then it went on and on.”
More recently, some experts have begun stretching the M.S.B.P. diagnosis even further. They are applying it to mothers who spend too much time visiting schools, not hospitals—to moms who “overadvocate” for special-education services, or aggressively seek diagnoses of cognitive or psychological difficulties, such as attention deficit disorder or dyslexia, for their children.
Herbert Schreier, the influential co-author of “Hurting for Love,” has written that school psychologists and behaviorists have become the “new targets” for manipulative mothers. He describes them, chillingly, in a 2000 article in the Journal of the American Academy of Child and Adolescent Psychiatry, as powerful figures with “the uncanny abilities of the psychopath or imposter to simulate someone above suspicion.” To complicate matters, some of these bad mothers are themselves psychologists or learning specialists, Schreier maintains, and thus have “broad and detailed knowledge of the mental-health field” with which to dupe school officials.
Schreier has argued that “we need to change the definition” of M.S.B.P. “by expanding the target audience of the mother” still further “to include police investigators, child-protection workers, lawyers, and school personnel”—anyone, it seems, in authority. The philosophers David B. Allison and Mark S. Roberts note, in their book “Disordered Mother or Disordered Diagnosis?,” that the definition of a Munchausen mom has devolved into “a manipulative person who seeks attention from somebody who can be construed to hold power of some kind: that is, probably, anybody.”
Randell Alexander, the M.S.B.P. scholar at the University of Florida, told me, “I think most of us would prefer to be more conservative. We’d probably like to save the M.S.B.P. label for something where the child is going to be poked with a needle by a doctor.” But it’s probably too late for such circumspection. A 2002 special issue of the journal Child Maltreatment carries an article entitled “Munchausen by Proxy: Presentations in Special Education.” It ends by listing some “common presentations” of mothers who have this problem—a new profile that’s strikingly like the old one, but with “educational” substituted for “medical.” Thus diagnosticians are warned to be on the lookout for “a parent (usually the mother) who appears to be educationally knowledgeable and/or fascinated with details of educational or learning disabilities, appears to enjoy the school environment, and often expresses interest in the details of other children with educational problems.”
Family courts considering M.S.B.P. cases are likely to hear estimates of mortality rates presented by the prosecution. These will probably be based on cases of medical abuse in hospital settings. Yet the new cases are often presented as though they shared a similarly dismal prognosis. The Child Maltreatment article quotes death rates of between nine and twenty-two per cent in Munchausen families. Even for hospital-abuse cases, twenty-two per cent is probably too high; Marc Feldman and others say nine per cent is more realistic. And, in any case, it seems a stretch to suggest that a mother who tries to get a child a diagnosis of attention deficit disorder (even if she’s doing a normal child a disservice) is as dangerous to her children as a mother who systematically smothers her baby. Yet some M.S.B.P. experts argue that the one behavior lies on a continuum with the other. In a variation on the old slippery-slope argument, angling for a learning-disorder label (and perhaps a better class placement) is seen as the equivalent of smoking marijuana, and smothering a child is tantamount to smoking heroin: one, it is feared, could lead to the other. A judge who worries that a child could end up dead may well err on the side of caution, and place him in foster care—a drastic step that can cause children to suffer tremendously.
Eric Mart recently testified in a case involving an M.S.B.P. accusation from school officials. The mother, who lives in Massachusetts and has a son and a daughter, “came to school and said her kids had terrible learning disabilities and kept demanding more evaluations and out-of-district placements. When officials took a good look, they were concerned whether there was anything wrong with these kids, and it actually went to court.” More than three years later, the case remains unresolved; the son, who turned eighteen, is now free to see his mother, but the daughter, who is in her mid-teens, remains in foster care.
When Richard Asher, a British physician, first identified the original Munchausen syndrome, it was 1951, and Britain’s National Health Service was only a few years old. Asher and the other doctors who first wrote about “peregrinating problem patients” characterized them with unusual vitriol, as Allison and Roberts observe in “Disordered Mother or Disordered Diagnosis?” One early article recommended that the British Medical Journal publish a “rogue’s gallery” of known fakers. In a remarkable violation of patient privacy, some case studies did print the names of their subjects. Several recommended that the lying “hospital hobos” be confined in mental asylums for life.
What accounted for the animosity toward these patients? In part, Munchausen sufferers rankled doctors because they presented so many opportunities for well-meaning professionals to make mistakes. As one writer who responded to Asher’s original case study observed, “All the rumpus and cost to the Health Service were caused by the many doctors who ordered expensive investigations and treatment, not by the patient, who merely, and quite lawfully, presented to his medical advisers with a tall story.”
It is also telling, however, that the Munchausen diagnosis emerged first in England, at the same time as the National Health Service. As Allison and Roberts note, millions of Britons “suffering from the massive dislocation, stress, abandonment, and grief created by the war” had a need for “comfort, housing, food, and shelter.” Many of these people turned to the new National Health Service scheme, “which offered free medical treatment within the reassuring confines of hospital care.” At the same time, “the creation of the national health care system was itself an ‘incentive’ for physicians and hospital staffs to take a dim view of patients in general, for fear that their private practices would be eliminated and they would be overwhelmed by additional thousands of ‘dole’ patients.”
By Pamela Weintraub, published September 1, 2007 - last reviewed on June 9, 2016
While her husband, Buddy, stayed back in Sierra Vista, Kelly and the kids left for Tucson, where a top-notch medical center could drill down. Soon they found the problem: a case of acid reflux so severe that doctors said Austin must be feeling pain equivalent to a heart attack. So began a marathon of surgery, feeding tubes and special formulas. "It was scary," Savage says.
Then Buddy got a job near a major hospital in Fort Worth, Texas, enabling the family to be together, at last. Little Austin arrived with a mountain of medical records. By then 9 months of age, "he had constant, watery diarrhea and weighed as much as a 3-month-old. You could see every bone in his body," Kelly Savage recalls.
Desperate, the Savages reached out to local doctors, eventually requesting that nutrients be delivered intravenously, despite damage to liver and kidneys that might result. "The doctors had no answers," says Kelly Savage, who worried that her baby might die. One doctor arranged for Austin to enter Fort Worth's famed Cook Children's Hospital in March 2004. Alone in the room with him, Kelly noticed an air bubble blocking his feeding tube, trapping gas in his stomach and preventing formula from getting through. Sensing her baby's pain, she sucked out an ounce of formula and the trapped air bubble beneath. "I planned to replace the ounce later," she states.
But she would never get the chance. Already suspect in the eyes of her new doctor, she'd been placed in a hospital room wired for surveillance, and now her accuser had "proof." Based on the video, the doctor charged, it was clear Kelly was stealing Austin's food, intentionally starving him because she craved the excitement of hospitals. Kelly Savage might have even killed Austin, all in pursuit of a bizarre form of child abuse called Munchausen by proxy (MBP), in which a parent—almost always a mother—exaggerates a child's symptoms or actually induces illness so she can swoop in to the rescue, thereby gaining attention and a special bond with the child's M.D.
That very day child protective services arrived to take Austin and his siblings into custody. In foster care, Austin refused to eat, stayed bloated, and had explosions of diarrhea. Finally the children, even Austin, were allowed to come home only if Kelly stayed away. With Austin's health at the precipice and her family ripped apart, she lived at a hotel and studied medical records, preparing for her day in court. "I swapped with my friends from church. I watched their children and they watched mine so my husband could go to work."
The Savage trial, in May 2004, lasted just two days. After expert witnesses combed through the medical records, dismantling the case against her, Kelly Savage was finally fully exonerated in January 2005. "It was a nightmare," she says. "We were too scared to take any of our children to the doctor until 2006."
A Controversial Syndrome
The very idea of MBP is difficult to grasp. Child abuse, of course, is a sad but well-known occurrence. That some mothers abuse children by poisoning or starving is beyond refute. But in Munchausen by proxy, hundreds of women a year in the U.S. alone are said to knowingly fabricate or induce illness in their children to garner a doctor's love. Whether the physician is male or female doesn't matter, says psychiatrist Herbert A. Schreier of Children's Hospital Oakland in California and co-author, with Judith Libow, of the influential book Hurting for Love. "These mothers are seeking a reparative relationship because they felt they weren't valued in their family of origin," Schreier states. "The mother becomes a 'perfect' mother in a perverse, fantasized relationship with a symbolically powerful physician." This motivation, he believes, is what differentiates MBP from ordinary medical abuse caused by anger, incompetence or neglect.
Given the abundance of accusations on the one hand and the outright strangeness of the syndrome on the other, MBP has become one of the most hotly contested psychiatric diagnoses in the country. On one side of the debate are psychiatrists, psychologists, and plenty of social service agencies who say these cases occur regularly. They route them out when children are absent from school, or where mothers frequently change doctors or move. "Most cases go unrecognized," says University of Alabama psychiatry professor Marc D. Feldman, author of Playing Sick, who's popularized MBP in the medical press. "Perpetrators have borderline personality disorders and maladaptive ways of handling stress," he contends. "They have a hazy sense of identity, and compensate by creating the persona of mother of the year."
On the other side of the argument are wrongly accused mothers and the experts who have analyzed their cases, fighting for them in court. "I have seen mothers accused of MBP simply because physicians disagreed about the medical management of their child," says Portland psychologist Loren Pankratz of Oregon Health & Science University. An authority on the psychology of deception and author of the book Patients Who Deceive, Pankratz calls MBP "vastly overdiagnosed."
"There's virtually no empirical evidence that it exists as a syndrome," states New Hampshire psychologist Eric G. Mart, who has deconstructed the theory in the book Munchausen's Syndrome by Proxy Reconsidered. "Controlled and blinded studies have never been done."
The controversy pits doctors against mothers—an irony given that the crux of the theory is the mother's desire for physicians' approval and nurturance. A changing zeitgeist fuels the dispute. Patient empowerment, dissatisfaction with managed health care, and the intensified face of motherhood conspire to escalate standoffs between the medical establishment and parents. Assertive, demanding, and well-informed, mothers increasingly challenge doctors as a matter of course.
When a child stays sick and no one has an answer, relationships can turn sour, even adversarial. "Mothers who argue with doctors or seem challenging have been accused," Pankratz says, "as have those with children who are hard to diagnose or treat. Since mothers with chronically ill children usually have very strong views about treatment, there's a huge pool of candidates at risk."
The Munchausen by proxy story starts across the Atlantic, where British physician Richard Asher described a group of wanderers who trekked from hospital to hospital fabricating complaints. In 1951 Asher named the condition Munchausen syndrome after Baron von Munchausen, whose travel and military adventures spawned a series of fabulist tales.
It wasn't until 1977 that the British pediatrician Roy Meadow, writing in the journal The Lancet, identified mothers he said were causing or fabricating their children's illnesses. The mothers were coldly and intentionally using the children as "proxies," he theorized, taking them to doctors to get the attention they themselves craved.
People found it hard to believe this argument until Meadow's pediatric colleague, David Southall, videotaped suspects, unbeknownst to them. The most shocking Southall tape showed a woman smothering her baby with a piece of plastic wrap, then running out to summon doctors whenever his breathing stopped. Though some of the tapes were later questioned, and suspects including the woman who smothered her baby were actually psychotic, here at last was evidence of mothers doing harm.
Meadow and Southall later spent decades on the Munchausen scene, examining patient records, then using statistics, video surveillance, and the "separation test"—in which a child is removed from a suspect parent and monitored for improvement—to identify MBP perpetrators and testify against them in court. To bolster cases when evidence was slim, they brandished a profile of the classic perpetrator—a seemingly caring mother with great knowledge of medicine, especially the illness at hand, who cultivated doctors, and was intensely involved in her child's care. Thousands of sick British children whose mothers fit the profile were removed from their homes over the course of 25 years.
One mother caught in the frenzy, attorney Sally Clark, lost two children to sudden infant death syndrome in 1996 and 1997. After Roy Meadow testified that the chance of two such deaths was 73 million to one, Clark was convicted of murder and sentenced to life in jail. But Meadow's calculations were wrong—he'd literally made mistakes in math. The correct statistic was 200 to one, a world of difference to the court.
When Clark won her appeal in 2003, it was as if the blinders came off in Great Britain. Excoriated for skewed statistics and the by-then discredited profile (mothers of genuinely sick children are often intensely involved in their children's care), Meadow almost lost his medical license and soon after, retired. Southall too came under fire after accusing Clark's husband, Stephen, of smothering his sons. The accusation was based on no more than Southall's impression of Stephen on TV.
For months, stories of wrongly accused parents rang through the British tabloids. This was junk science, members of Parliament and the British medical establishment ultimately declared.
Britain's MBP-backlash notwithstanding, the diagnosis is flourishing in the U.S. One case considered classic by Herbert Schreier is that of Coral Gables, Florida, mother Kathy Bush. Her daughter, Jennifer, spent 640 days in the hospital and underwent 40 operations, including removal of her gall bladder, appendix, and parts of her intestine, from ages 2 through 9. As the tireless advocate for a chronically ill child, Bush appeared with Hillary Clinton in her quest for health-care reform—before being convicted of making Jennifer sick by infecting her feeding tubes and giving her damaging drugs in 1999. She served three years in jail.
Bush has always maintained her innocence, but Schreier isn't impressed. He sees Bush and other such mothers as impostors devoid of feeling for their children. "The purpose is not to kill the child but to keep her sick, so that the mother can be in a relationship with the doctor, who would recognize her devotion, knowledge, and sacrifice," he states. As for the doctors, Schreier says they're routinely fooled by Munchausen mothers, "who may be issuing a dare, a challenge of who can outsmart whom."
No one has done more work to ring the alarm than Louisa J. Lasher, a former child protection worker from Georgia who runs the only forensic service devoted exclusively to MBP. She first learned of it, she says, when a mother she investigated made her daughter appear ill by painting her panties with blood, leading to unnecessary procedures. Soon Lasher was running workshops and training others to look for signs.
Today, when child protection agencies want to train case workers, they turn to Lasher. With her slide show, videos, and experiential exercises, she's taught thousands of case workers in dozens of states her investigative techniques and views on MBP. When a jurisdiction thinks it's dealing with a perpetrator, they recruit Lasher as expert witness. In a typical week, she fields dozens of e-mails and calls, and during any given month she's flying around the country, testifying in court.
"Because they rarely admit to their acts and deny any wrongdoing, they are generally incurable," Lasher says. "So I've never recommended reunification in a genuine MBP case."
Whether due to extreme stigma or the rarity of the phenomenon, few self-identified victims ever speak out. "They are very vulnerable to public attention since this kind of publicity is typical of the kind of victimization they experienced," explains Harvard psychologist Catherine Ayoub.
Those coming forward, moreover, don't necessarily have tales as neat or paradigmatic as the classic definition of the syndrome might suggest. Bree, now 29, says her mother withheld crucial antibiotics as an infant, causing her to remain perpetually sick. Her health stabilized during childhood, but then, at age 12, it all changed when her mother learned Bree had been named after her father's childhood crush.
From that point on, Bree says, she could taste the sickly sweet flavor of purple gum—it turned out to be the emetic ipecac—in food her mother prepared for her. After such meals Bree suffered uncontrollable vomiting and dehydration, eventually becoming so impaired that she often missed school and was confined to a wheelchair. "It was always worse in March, around Mom's birthday," Bree recalls.
She was almost 18 when doctors found toxic levels of the anti-seizure medicine Depakote in her blood, despite their explicit orders to stop that treatment. The police were called and Bree was carted off to a foster home. "At first I didn't believe it, and I wanted to get back to Mom." But a new, loving family and years of therapy have helped her recover and convinced her of the abuse. "I was never sick after I left Mom," Bree says. Bree's mother appeared to be punishing her for the perceived transgressions of her father, but she also basked in the attention that a sick child conferred on her, Bree says today.
Another survivor, Lauren—not her real name—is now 40. Her violent mother had long beaten her. Then she began giving ipecac and paregoric to Lauren and other children while baby-sitting, regularly causing them to throw up. "I knew what she was doing, and I was furious," says Lauren, "but she said she would kill me if I told." The medical abuse stopped a year later, when a pharmacist refused to refill the prescriptions. "Then the beatings increased," Lauren recalls. Now a clinical social worker, Lauren reflects: "My mother felt she had no family or support, though she did. No matter how much was done for her, it was never enough."
Lauren says that despite all her education and sophisticated understanding of abuse, she remained afraid to speak out until her mother died of a massive heart attack in 2002. "There is fear of not being believed and fear of retaliation by the abuser," she says. Both women now maintain limited contact with their families of origin.
Despite all the theories and prosecutions—despite reports of abuse by children now grown—Munchausen by proxy has never been embraced as a formal diagnosis by the American Psychiatric Association in its diagnostic bible, the DSM-IV. Not yet a proven entity, the syndrome is a theory waiting for research to validate it as real.
Even if Schreier's theories on motivation are eventually borne out in studies, the problem of false accusations will persist. In case after case, families with complex medical histories have been stripped of their children and left to fight for custody in court.
One such mother is Mannie Taimuty-Loomis, whose son, Jonah, had cerebral palsy and was mentally retarded and blind. He died of heart failure at age 3 in 2001. After his death, doctors suggested he'd suffered mitochondrial disease, in which the cell's energy factories malfunction, causing a wide array of ills. Moving on that hunch, they finally diagnosed the condition through a muscle biopsy performed on Jonah's older brother, Ezra, who, like their younger sister Symia, had been sick from birth.
Mannie and her husband, Ron, who was training for the ministry, founded the nonprofit Jonah & the Whale Foundation to help other parents of the chronically ill. They also brought Ezra and Symia to top medical experts, who agreed the children had mitochondrial disease and treated both aggressively. Despite that, they became so ill they too seemed headed toward certain death.
It was a resident at Pittsburgh's Mercy Hospital who blew the whistle in 2004. As the head of an organization for special-needs families, Mannie fit the typical MBP-parent profile, after all, and the resident didn't believe her children were truly sick. Child protective services took little Ezra and Symia, removing the intravenous lines that delivered their nutrients and drugs, stopping the treatment cold. Dramatically—in what could be interpreted as confirmation of MBP—the children (who did have mitochondrial disease) nonetheless began to improve. Yet it hadn't been Mannie who'd lobbied for all that medication, but some of the top doctors in the world.
"It's so ironic," says Mannie Taimuty-Loomis, whose trial took place on 15 separate days spread over nine months, a period during which she was separated from her kids. "Our children were the patients of 15 doctors, and not one stopped to think that it could be the treatment, not the disease they had, that was making them that sick." The court agreed, vindicating Mannie and Ron of any wrongdoing in 2005.
Also falsely accused was Terri Reiser, a North Carolina artist, whose 16-year-old daughter, Mimi, is diagnosed with Lyme disease and is under a specialist's care. Last year, Mimi was bullied by local teens who posted nude pictures online and falsely said they were photos of her. Frantic over the situation, she landed in the hospital, where she told psychiatrists about the Lyme disease. They were skeptical of the diagnosis. When Terri came in to confirm it, she was labeled suspect as well. Mimi was released from the hospital, but doctors had called authorities. Terri was brainwashing Mimi, they charged, by convincing her she had Lyme disease. The phrase Munchausen by proxy was written into the medical record, and an investigation launched.
When a lawyer called to warn that Catawba County agents could be on their way right then, Mimi slipped out the back door. First she said good-bye to her beloved horse, then she went down the road. Terrified they would pull her Lyme treatment and lock her away for years, Mimi simply disappeared, contacting Terri just sporadically to let her know she was safe. In May 2007, having turned 16, Mimi found the only out available to her: She married her boyfriend, ending the dominion of the state. Mimi was declared emancipated, and the case was dropped in June.
"We had so many losses," Mimi says. She's particularly saddened by the death of her horse's foal. "She wouldn't have died if I'd been there," she reflects.
"Marriage at 16 is not what I wanted for her, but it was our only choice," says Terri, who's invited Mimi and her new husband to live as a family in her home. "We're trying to rebuild our lives, but moving past it is so hard. I know bad things happen in life, but good God, do they have to traumatize people like this?"
The Perfect Storm
Here in the U.S., awareness of MBP may be rising along with antagonism between doctors and moms. "I have never known a false case not sparked by conflict between a mother and a doctor," New Hampshire psychologist Eric Mart states.
Schreier says powerless mothers are clamoring for intimacy with doctors. But he could be recalling an era past, when doctors were emotionally present and generous with their time. Indeed, the impersonal nature of modern medicine doesn't seem to support the Munchausen by proxy construct. Marching to the drumbeat of managed care, in fear of litigation, 21st century doctors may have little interest in schmoozing. They are often seen as distant by the very patients they serve.
Mothers, too, have changed. Best described by Judith Warner in her book Perfect Madness: Motherhood in the Age of Anxiety, post-millennium moms are intense, omnipresent, and highly involved. From finding the perfect nursery school to engineering marathon play dates, nothing escapes their attention and no detail is too small. Taught independence by their own feminist mothers, at home with their children by choice, these educated women aren't likely to defer to a doctor when a child stays sick. The more mothers learn, the more they access the Internet, and the more intense and independent they become, the more they will spar with doctors—and the more they'll be at risk of being labeled a Munchausen mom.
"If it were the man demanding help, wanting to know more and wanting to be involved, no one would think anything of it except, 'What a dad!'" says Mannie Taimuty-Loomis, now executive director of the Jonah & the Whale Foundation. "But when a mother displays the same characteristics she's deemed difficult to work with, overly interested, and very controlling."
"Diseases that can't be fixed can create enormous amounts of anxiety," adds Tracy Davenport, a University of Delaware expert on the social impact of illness. "Doctors want these patients out of their office, while the patients are filled with loneliness and despair—not because they want the doctor to love them, but because they want the disease to go away."
Pennsylvania psychiatrist Virginia Sherr has a special interest in Lyme disease, whose neurocognitive symptoms can seem bizarre and vague. She says she's seen false allegations time and again when a mother tries to get help for a child who's truly sick. "Modern medicine tends to trivialize women's seemingly offbeat concerns, and hurried physicians who seek easy panaceas drastically devalue mothers' opinions," she states. "Worldwide, there have been thousands of very sick children forcibly removed from mothers because these women have insisted, quite knowingly, that their children are ill."
"We are seeing a conflict between doctors and patients that didn't exist before," says Davenport. "Mothers are increasingly demanding consumers. They are texting friends by BlackBerry and getting information in minutes that trumps what their doctors advise. Rather than idolize their doctors, they are apt to antagonize them, leading to more misunderstanding and more charges of MBP in years ahead."
Mannie Taimuty-Loomis, meanwhile, thinks the next wave of allegations could come from the rising tide of autism diagnoses. "I see all the red flags," she states. "There is no definitive diagnostic tool, it is a spectrum disorder that has a wide confusing range, and parents are being hit like ping-pong balls with differing opinions, treatments, and diagnostic titles. This is a toxic mixture for accusations of MBP."
When children suffer complex, or controversial, or confusing illnesses, when symptoms are amorphous or vague, parents can be accused. The situation has been compared by SUNY Stony Brook philosophers David B. Allison and Mark S. Roberts, authors of Disordered Mother or Disordered Diagnosis?, to the witch trials, in which thousands were killed around the world. As with MBP, the women were perceived as abrasive and paid a heavy price.
The intellectual dilemma here, says Kirk Witherspoon, an Illinois psychologist studying the issue, is that two unrelated elements have been mixed. One of them is motive, which is a cause. The other is abuse, which is a result. There's no proof that the theorized motive—a need for attention—explains the abuse routinely labeled MBP. But that doesn't stop some doctors from "dredging up motive to scapegoat mothers when they don't have answers," says Witherspoon. "Instead of diagnosing the child with a disease, they diagnose the parent with a crime. When mothers challenge their authority, doctors call it a pathology, one that's so broad it fits everyone. For example, if the mother is too friendly, a sign of Munchausen. If the mother is angry, a sign of Munchausen. There's no differential diagnosis. It's preposterous. It doesn't make logical sense."
Feldman attributes the confusion, in part, to invalid profiling. "There is no profile," he says. "There has to be proof."
But there, too, problems abound. Subject to misinterpretation, tools like covert taping (used to entrap Kelly Savage) and family separation (the evidence against the Taimuty-Loomis family) can lead to false allegations. Children who suffer from acid reflux are a prime example. They are often treated with Reglan, a drug that can cause seizures and a full range of unusual side effects. Mothers are blamed for the symptoms, and then separated from their children. The treatment is stopped, and the children get well, apparently confirming MBP. And since many conditions improve on their own over time, the separation test is an imperfect investigative tool.
In light of all this, even doctors convinced of MBP's reality are pulling back. Feldman insists the syndrome exists, but says "we've gone too far. Those of us on the front lines must take ownership of the problem and admit we've been overzealous. Innocent mothers have been accused." Feldman is especially troubled because when vindictive doctors make false reports, they're protected by the law and consequences are nil.
"We have created a monster in our imagination that we project onto certain mothers," Pankratz says. "Some of these mothers have problems in the medical management of their children and need clinical help, but the exotic label has entangled them in a destructive web, seemingly without escape."
Eric Mart points to psychiatry as a field rife with discredited theories—for instance the idea that "refrigerator mothers" create autistic kids. When studies are done, such concepts are relegated to the dustbin of science, and MBP stands poised to end there, too, he states. "I'm not saying the abuse doesn't happen," Mart emphasizes. "I'm just saying the theory behind the syndrome doesn't hold up."
"Why call it Munchausen," asks Kirk Witherspoon, "when you can just call it abuse or murder."