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.”
In this way, the social and economic circumstances of medicine helped bring needy patients into contact with frustrated doctors; one product of this interaction was the portrait of the despised Munchausen patient. Similarly, it is no accident that the rise of the Munchausen by proxy diagnosis has run parallel with the rise of aggressive behavior in medical patients. During the past decade, people have routinely shown up at doctors’ offices armed with Internet printouts, or displayed a suspicion of “mainstream medicine” fed by alternative practitioners and by dissatisfaction with managed care. These patients, caught up in their conceptions of themselves as “empowered advocates,” can come into conflict with doctors and caseworkers.
In the H.M.O. era, many parents see themselves as needing to fight for their children’s rights in an overtaxed health-care system. Yet doctors and nurses are frequently exasperated by what they consider to be pushy behavior. A 2001 study of children’s pain management in hospitals concluded that nurses often resent parental involvement because they think it increases their workload: if parents were “passive,” then the nurses “were not being approached and having demands made on their time.”
False allegations of M.S.B.P. can arise from the misreading of insistent patient behavior as malicious behavior. Eric Mart told me, “My wife has coined a term: obnoxious mother syndrome. I think that’s part of what’s going on here.” Penny Knapp, a professor of psychiatry at the University of California at Davis, who has studied cases of M.S.B.P., recalls “receiving a number of referrals from a physician who is a rather colorful character, strong-willed and sharp-tongued. He used to get into struggles with some parents, and then he’d call me up and say, ‘O.K., I’ve got a Munchausen up here.’ I’d go and do an evaluation, and what I’d find is a troubled parent who wasn’t communicating well and wasn’t complying with treatment and maybe wasn’t coping—but not somebody who was deliberately harming her child.”
According to some experts, M.S.B.P. diagnosis is applied most frequently to working-class moms. Perhaps this is because their demands are not as easily met by doctors. “If I have a million dollars and I want to take my kid for three or four psychoeducational evaluations, they’ll take my money till the cows come home,” Mart explained. “It’s when somebody is getting Medicaid, or getting some services and starts asking for more help, that very often you’ll find that somebody—a caseworker, a nurse—gets into a little argument with them, and then we’re off to the races.”
In 1997, the child-protective services of Los Angeles County placed Debra Reid’s nine-year-old son in foster care. Jonathan had asthma, but social workers reported that Reid appeared to be exaggerating his symptoms, had missed doctors’ appointments, and had taken him to the emergency room too often—all of which, they said, suggested M.S.B.P. Reid was a single mother of four who lived in Gardena, a racially diverse town where she was a community activist. According to the Los Angeles Times, social workers described Reid as a “loudmouth,” and she came across as hostile or pigheaded to many professionals she met while trying to retain custody of her son—though this anger was directed only at them, not at her children. According to an article by Michael Gougis in New Times Los Angeles, Reid told one caseworker that “he had no life and needed to get one.”
A juvenile-court commissioner who considered Reid’s family situation did not fault her for calling 911 too often, noting that, “faced with a child either having great difficulty breathing or not breathing at all, a reasonably prudent person would call 911.” But the judge added, “Although Ms. Reid is knowledgeable and concerned for her children’s medical needs, she does what she thinks is right and to a significant extent disregards what others think is the correct course of treatment based on their professional opinions. The totality of the evidence supports a pattern of non-cooperation, unrealistic positions, and behaviors by Ms. Reid.”
When it came to the severity of Jonathan’s asthma, and her own ability to keep him alive, Debra Reid was, apparently, quite realistic. Six weeks after the county removed him from his mother’s care, Jonathan died of an asthma attack in the middle of the night, at a hospital to which his foster parents had taken him. His foster mother said that she hadn’t been told how bad his asthma was. In 2002, the county approved a million-dollar settlement for Reid. One of the supervisors, Gloria Molina, cried as she apologized to Reid on behalf of the county. “They said my child was healthy,” Reid told the Los Angeles County Board of Supervisors. “Well, that child now lies in an Inglewood Cemetery.”
When Katerina de Sousa was four years old, Nicola took her to Children’s Hospital in Boston for an annual checkup of her liver, and while she was there she mentioned Katerina’s difficulties with bladder and bowel control, and some conflicting diagnoses that she had received from Canadian doctors. A neurologist at the hospital ordered an MRI, and discovered that Katerina had a tethered cord: her spinal cord was fastened to a benign fatty tumor and could not move freely. A tethered cord can cause various problems, including spinal curvature, back and leg pain, and incontinence. As a child grows, the cord becomes stretched beyond capacity, damaging surrounding nerves and blood vessels. The de Sousas couldn’t afford elective surgery in Boston, so they returned to Canada; two months later, a neurosurgeon in Toronto performed an operation to untether the cord.
Katerina was beginning to thrive—she attended a nursery school, at which Nicola was a frequent volunteer, and she took swimming lessons and gymnastics. She was on her way to becoming the pre-Raphaelite beauty that she is today, with milk-white skin, a luminous smile, and a scattering of pale freckles. But she also had several symptoms that, as she grew older, became more pronounced. She experienced continued incontinence, and pain and weakness in her legs, which the tethered-cord surgery does not always correct. (Indeed, scarring can make the pain worse.) Other symptoms were more baffling: her left eye sometimes rolled upward independently; she had headaches; sometimes she seemed to have double vision, and complained that she saw two Mommies. At other times, she insisted that she had “bees in her ears”—probably tinnitus—and she couldn’t stand loud noises. She sometimes had choking spells when she ate. Nicola’s father, Ian Templeton, a retired physicist, recalls that he and his wife, Elsa, were often nervous when Nicola dropped Katerina off for lunch at their house: “It was scary. She’d just be eating and then—for a moment she wouldn’t be breathing.” With the exception of the eye-rolling, doctors did not witness these symptoms, which were described by the de Sousas as unpredictable and intermittent.
During a visit to a physical-therapy specialist in Toronto, a nurse asked Nicola if she had ever considered whether Katerina might have Chiari syndrome, a developmental anomaly in which the lower portions of the brain are compressed. Her symptoms were consistent with the disease, the nurse said. At the de Sousas’ behest, a neurosurgeon in Canada examined Katerina but concluded that she did not have the classic Chiari malformation, in which the tonsils of the lower brain project downward. But, in the meantime, Eurico had read about a neurosurgeon in Brooklyn, Thomas Milhorat, who was adept at reading MRI scans for subtler signs of skull crowding. Milhorat, who now heads the Chiari Institute in Great Neck, New York, examined brain scans of Katerina and concluded that there was clinical and MRI evidence of Chiari syndrome. The de Sousas sought a second opinion from David Frim, the chief of pediatric neurosurgery at the University of Chicago. He, too, saw evidence of brain crowding, and believed that Katerina’s clinical symptoms pointed to Chiari syndrome. He also offered to perform the surgery for free.
Frim recently told me that treating Katerina’s condition as Chiari syndrome “was kind of a presumption,” because the brain scans weren’t “a hundred per cent classic.” On the other hand, “she had all these symptoms,” he said. “Her imaging wasn’t convincing, but her clinical picture was.” Five per cent of patients with tethered cords have Chiari syndrome, Frim reasoned, and “in patients where there are progressive life-threatening symptoms”—by which he meant Katerina’s choking spells—“there is a place for this operation.” Still, as he explained to the de Sousas at the time, the operation “was a little bit of a leap of faith.”
In Canada, the doctor whom the de Sousas informed of their decision, E. C. G. Ventureyra, the chief of neurosurgery at the Children’s Hospital of Eastern Ontario, was extremely dubious. In December, 1998, he wrote a scathing letter to them outlining his objections. “I have read with interest both Dr. Milhorat and Frim’s correspondence,” the letter said. “Based on my findings I must disagree with their recommendation for posterior-fossa decompression in Katerina’s case. . . . I strongly feel that advocating posterior-fossa decompression in this particular case is equivalent to advocating acupuncture, herbal medicine, or electromagnetic-wave therapy. . . . In my view, when a surgical indication does not exist, surgery should not be used.”
It’s not clear who first used the phrase “Munchausen syndrome by proxy” to describe Nicola de Sousa’s care of her daughter. Susan Bennett, the chief of child protection at the Children’s Hospital of Eastern Ontario, would not comment. A spokesman for the Children’s Aid Society said that the agency could not comment on specific cases. But it is clear that the Canadian doctors who knew about the Chiari diagnosis didn’t approve, and were alarmed by the de Sousas’ pursuit of surgery.
Frim found the de Sousas’ approach neither unusual nor disquieting. “This is how medicine is now,” he said. “We have patients who come in with hundreds of pages they’ve printed off the Internet, and they’ve seen six other neurologists. The de Sousas were looking for the best possible care, and they were demanding, but that doesn’t mean they were wacko.” In January, 1999, Frim performed cranial surgery on Katerina. He found that Katerina had abnormal tonsils that were impeding the flow of fluid between the brain and the spinal cord, much the way a classic Chiari malformation would. According to the de Sousas, within a few weeks after the operation all the symptoms associated with Chiari syndrome—the eye-rolling, the choking, the headaches—vanished.
Katerina continued, however, to experience pain and weakness in her legs, as well as incontinence; her charts show a number of consultations with pain clinics. In the spring of 2001, the de Sousas decided to see Frim again. He suggested that the cord might have become retethered—a fairly common occurrence—and that a second operation might be advisable. Once more, he offered to waive his fee, and, once more, the choice was not an obvious one. Bowel and bladder problems can be made worse by surgery, and back and leg pain isn’t always resolved, either. The de Sousas opted for the surgery. They believe that it did give Katerina some pain relief and greater mobility, though it was not a cure.
One of the issues in the M.S.B.P. investigation was that Nicola had made far too much of Katerina’s leg pain—that she coddled her daughter, sometimes carrying her to the car after school. Ned Jackson, the caseworker, notes in his affidavit that he “personally observed Mrs. de Sousa carry Katerina out of the school on one occasion.” One of the caseworkers who first interviewed Katerina noted skeptically that she “confirmed that she has pain in her leg, and pointed to a certain spot, but no further detail.”
The case file, which the de Sousas shared with me, also contains a passionate letter from Peter Morrice, a pediatrician who saw Katerina. He wrote, “The impression my nurse and I have of Mrs. de Sousa is that she appears driven and highly anxious. We have wondered about an element of depression with her and have noted the very strong bond between herself and Katerina—understandable from Katerina’s life-threatening early months of life. Although physical causes have undoubtedly played a role in Katerina’s symptoms, one has to query psychological ‘stress factors’ as super-added factors.” He speculated that Nicola’s anxiety might be “related to the number of investigations and treatment at different centres. . . . It was my wish that the parents reduce drastically . . . the number of investigations that Katerina has to undergo. . . . It is quite possible that at least some of her chronic constipation and urinary symptoms have a psychological origin. On the surface she appears to be a healthy girl though at times sad and withdrawn. Would her symptoms (those that still exist) diminish if she could be given a rest from investigation and allowed a more normal and happy childhood?”
Ned Jackson makes a darker speculation in the affidavit. Nicola, he reports, “stated that Katerina wears a diaper as her legs go numb when she sits on the toilet.” Though he admits to a “lack of medical knowledge,” he nonetheless wonders if “Katerina’s incontinence is a result of her never being properly toilet trained.” How can Jackson imagine Nicola engaging in such a cruel trick? In his opinion, she had subjected Katerina to “extensive and invasive tests throughout her short life,” nearly all of which “produced normal results.” Jackson suggests that, in the end, Nicola’s imagination had caused her to harm Katerina: “The vast majority of Katerina’s reported symptoms do not appear to have been witnessed by health practitioners or individuals other than Mrs. de Sousa.”
By the time the caseworkers showed up at the de Sousa home, however, Nicola said that she had begun to think of Katerina as “pretty healthy.” She felt that Katerina did better when she came home in the afternoon and could take a bath if necessary, and lie down or try other comfortable positions while doing her schoolwork. Diane Beckett, an environmental consultant whose son attended Katerina’s school, remembers thinking that Nicola’s decision to volunteer at the school by working in the library or helping with the reading program allowed her “to be available to Katerina in a supportive role if she needed her without being a hovering mom, as so many would be in that situation.”
The M.S.B.P. investigation of the de Sousas lasted longer than a year. During that time, Katerina remained with her parents, pending a possible appearance in family court to decide whether she should be placed in foster care. The de Sousas began homeschooling her, partly because they thought they could manage Katerina’s pain better at home, and partly because they believed that it conferred some academic advantages—but mainly because they worried that social workers might arrive at school and take their daughter away. In the meantime, Katerina did lots of things that propelled her into the world: she took weekly classes in drama, pottery, painting, drawing, and swimming, and she practiced woodworking at a local home-improvement store. (To Nicola’s delight, Katerina turned out to be a whiz with power tools.) She played regularly with her old schoolmate Victoria. Still, keeping Katerina at home only reinforced the suspicions of Nicola’s accusers. In his affidavit, Jackson calls the de Sousas’ decision “surprising, and concerning.” Homeschooling is a kind of sheltering, and the M.S.B.P. investigation was based, in part, on the idea that Nicola sheltered Katerina too much.
Eurico enlisted the support of the de Sousas’ family physician, Nancy Clevette, who told caseworkers that she had never seen anything but a loving relationship between Nicola and Katerina. They got Nicola’s psychiatrist, who had known her since 1987, to write a letter, and he, too, told caseworkers emphatically that he did not believe Nicola was a Munchausen mother. Several medical professionals whom the de Sousas had seen in the United States also wrote letters on Nicola’s behalf. Judah Folkman wrote, “All of the doctors at the Children’s Hospital in Boston who have cared for Katerina agree that Mrs. de Sousa is a very fine mother who has always taken very good care of her daughter.”
As time wore on, the de Sousas began to feel isolated and bitter. Eurico’s father died of a stroke in November, 2002, without knowing whether Nicola and Eurico would be able to keep his only grandchild. Katerina, who had overheard the caseworkers say “We’re not going to take her today” on their first visit to the de Sousas’ home, had nightmares about being placed in foster care. Some acquaintances and friends stopped speaking to the family when they heard that Nicola was being investigated for child abuse. In the grocery store, when neighbors saw Nicola, they escaped to another aisle. The de Sousas hired four lawyers and spent about fifteen thousand dollars on Nicola’s defense. They began writing indignant letters, some of them rather ill considered, to various officials, members of the press, and politicians who they thought should know about their ordeal. They became increasingly terrified of losing Katerina.
In May, 2003, the de Sousas received a letter. It was very short, and its tone was dispassionate. It said, “I am writing to advise you that the Children’s Aid Society of Ottawa will be closing its file. . . . I trust the above is satisfactory.”
Though the accusations against Nicola have been shelved, she is still shaken, and bewildered. She said, “I asked them, ‘How could you say we put our daughter under the knife for surgeries that are unnecessary? How could you be threatening to take our child away?’ We went to the ends of the earth to help her. I just hope they’d do the same if it were their child.” ♦
