Munchausen by mommy.
Keywords: Munchausen's Syndrome by Proxy, continuity of care, health care system, health-care professionals' communication, community-hospital collaboration
Sarah gave birth to her fourth child, Joy, on Passover eve. Thirty-two weeks pregnant, she endured contractions throughout a long day of cleaning. The contractions could not be stopped, and Joy was born prematurely. There was great joy over the girl's birth. Joy spent several weeks in the neonatal intensive care unit without complications, after which she was sent home.
Worrisome signs appeared after a few weeks. One night, Sarah urgently summoned the family physician for a home visit. "Joy became suddenly stiff in my hands!" Sarah shouted hysterically. Her description included all the symptoms of near sudden infant death syndrome: apnea, turning blue, eye rolling. "I was sure the child had died," Sarah added. On examination, the child appeared relaxed, smiling, with no shortness of breath or other symptoms of concern. However, the mother's account obligated an immediate admission to the pediatric inpatient unit.
It was to be the first in a series of prolonged and difficult hospitalizations. Joy's condition went from bad to worse. She underwent an extensive examination, with every positive finding leading to yet another test. She contracted multiple illnesses because of infectious disease exposure during her extended stays in the pediatric ward. Sarah devotedly stayed by her bed, sometimes for days and nights without a break. She did not go home to change clothes or shower. She eagerly absorbed the doctors' opinions and communicated all of the various diagnoses and ideas to the other doctors. She could pronounce the longest Latin words and fluently describe any abnormalities discovered in Joy's invasive imaging tests and the additional clarification they each required.
Dr. K, Joy's family physician, became concerned about these dynamics at this early stage. When Dr. K visited Joy in the hospital to recruit helpers for Sarah, Sarah refused. Dr. K suspected Joy's condition had some iatrogenic origins. However, the inpatient medical staff focused on the pathological test results and the mother's inner conviction. Dr. K did not share her suspicions because she did not have any proof.
In the context of the extremely busy and chaotic medical setting, Sarah became the liaison between the various specialists. The specialists began to rely on her, essentially making Sarah part of the team. Sarah explained previous professionals' conclusions to each newcomer. She and the medical providers engaged in the intellectual exercise of differential diagnosis together. She suggested her own ideas, tending to emphasize rare, serious diagnoses. Sarah focused on the limitations of each normal test result, insisting that tests that occurred under less-than-optimal conditions be repeated. She constantly sought more problems.
Sarah blossomed. She became the resident expert in the pediatric ward, her second home. Other mothers consulted with her. She knew it all: names of doctors, tests, medications, and mystics and soothsayers who could provide amulets, blessings, and potions. Her regular home was managed by Sarah's husband, a quiet man who viewed Sarah as the children's caregiver and accepted her role as the family's sole health coordinator.
Secondary to her hospitalizations and heavy medications, Joy lost her appetite. Sarah was very strict with the nurses, ensuring they weighed her twice a day. She drew precise graphs to demonstrate that the child was not gaining weight. Ultimately, the medical team inserted a feeding tube into Joy's stomach. Sarah supervised the slow dripping of milk into Joy's digestive system. Because Joy was fed around the clock, she was never hungry and made no attempt to take bottles nurses offered to her. After a short while, Joy was declared "incapable of eating." The team recommended a permanent gastrostomy tube attached to a Kangaroo bag.
At 12 months, Joy occasionally returned home for short spells. However, Sarah would bring her to the Emergency Department if she had a slight fever or cough. The family physician tried to prevent these trips by offering reassurance, a simple treatment, or advising Joy's family to watch her longer before seeking care. Sarah would subvert her efforts by seeking a second opinion or visiting the Emergency Department. Joy's history as the "highly problematic" girl typically resulted in admission. She would then be monitored and treated for several weeks. Sarah was always nice, concerned, and grateful to the caregivers.
Over time, the family physician began to harbor serious doubts about the source of Joy's difficulties. She contacted Joy's main physicians on the pediatric ward. For the first time, the family physician openly suggested considering the possibility of Munchausen syndrome by proxy (MSP). The hospital's experienced pediatric gastroenterologist agreed to call for a large joint meeting including all of Joy's caregivers from the community and the hospital. The meeting was the first time the professionals communicated directly and examined Joy's course of treatment in depth. Despite the thorough investigation into the case's details, no conclusive diagnosis could be reached. Social workers from the pediatric ward and from Sarah's village participated in the meeting. The community social workers arranged a meeting with Sarah and her husband, hoping to increase their social support and to assess what role, if any, Sarah had in Joy's illnesses.
As time passed, Joy missed multiple developmental milestones. Joy had difficulty learning to talk because she had not used her mouth for eating. An intelligent toddler, she acquired sign language at the age of 18 months. Her motor development was delayed because the family constantly carried her. She never crawled, but started walking at 24 months.
Sarah never separated from Joy. She identified with her fully and nullified herself; "I have no time to look after myself," she would always say with humility and modesty. The caregivers greatly admired the "perfect" mother. Sarah's impeccable behavior made it difficult to imagine that she played a causitory role in Joy's symptoms.
However, over time information surfaced that substantiated suspicions of MSP. For example, Sarah insisted Joy needed a gastrostomy tube and was unable to take food by mouth. Yet, at 30 months neighbors told the social worker that Joy ate regular food when away from her mother's watchful eyes. The village clinic staff tried to wean Joy off the gastrostomy feeding, but Sarah fought the weaning procedure like a lioness. Clinic staff noted that Joy enjoyed eating snacks. Yet Sarah claimed that Joy would vomit, cough, and choke when she tried to eat. Sarah cited documented weight losses of a few grams as proof that tube feeding was necessary. Sarah demanded additional invasive tests even when all possible investigations had been exhausted.
When Joy was almost 3 years old, a severe iatrogenic complication clarified the diagnosis of MSP. The gastrostomy tube "moved" from its place in the stomach. During attempts to replace the tube, Joy's abdominal wall was punctured, resulting in uncontrolled hemorrhaging from her digestive system. Joy was admitted to the intensive care unit with an abdominal cavity infection. Initially, there was fear that Joy would die, but she did not. Everyone agreed her survival was a miracle. Sarah never left her side.
After Joy recovered, she began to take oral nourishment exclusively. The medical providers observed that she was able to swallow, absorb, and grow. Sarah protested, hysterically crying and insisting that Joy ate only minimal amounts of food. Yet, Joy continued to eat and develop. At age 3, she finally began to speak. Sarah finally agreed to allow Joy to use her mouth for food and language, like any regular child.
As Joy developed, Sarah began revealing her own story. A social worker who had participated in the first multiprofessional meeting had maintained a good relationship with Sarah. She encouraged Sarah to share stories from her childhood and her family of origin. The social worker reviewed records of treatment provided to Sarah's family of origin more than 20 years ago. Sarah herself offered very few clues, but data collected from her hints, plus information from the records, revealed a sad story. Sarah grew up in an impoverished, remote immigrant town. She was removed from her home and sent to a boarding school at the age of 8 secondary to suspicions of sexual abuse by her father. Sarah's family agreed to send her to a boarding school for distressed children to avoid placement in foster care. In this manner, the parents never acknowledged the father's abuse and the mother's neglect. Sarah viewed her separation from her parents as a horrific secret. Even as an adult Sarah defended her abusive father, shrouding the memories of his abuse with layers of denial. Sarah cared for her mother, a heavy-set, diabetic woman, although she had not helped Sarah escape the abuse.
Sadly, the boarding school was not an adequate substitute for a healthy family and home. Sarah experienced a great deal of loneliness and alienation. Like many girls in distress, Sarah attempted to escape her family by getting married early, at 16. She immediately began having children, the first born when Sarah was 17. The family lived in poverty, under great stress. Sarah's self-perception was that she did everything she could for her children's happiness, health and safety. Her entire identity was a "protective mother." She would not repeat her mother's impotence and neglect.
This dynamic set the stage for MSP. Sarah needed a strong and inseparable mother-child bond based on joint desperation, illness, and sacrifice. She found comfort in the sense that she and Joy faced a hostile world together. Mere standard childhood illnesses would not have fulfilled Sarah's need to be heroic. Sarah had to create dreadful and rare illnesses and put Joy's life at stake to be her savior.
Paradoxically, the acceptable treatment for MSP is separation of the child and the mother. The health and social authorities told Sarah she must undergo psychological treatment or Joy would be removed from the home. Sarah agreed to start treatment, which focused on helping Sarah to control her anxieties and let the experts take over responsibility for Joy's health. Sarah was never able to recognize her role in Joy's illnesses. Each attempt to promote such insight was met with strong resistance and threats to quit therapy. The therapist worked to reduce the enmeshment in the mother-child dyad and to develop a trusting relationship with Sarah. Social services met with Joy's father as well, finding him to be a passive man. He stopped therapy after only a few meetings, claiming to be busy at work.
The medical, social, and psychological services carefully monitored Joy's rehabilitation via close collaboration of all the professional caregivers. Whenever Sarah sought medical procedures or admissions for Joy, the primary care doctor, social worker, and Sarah's psychologist would evaluate the situation together. They collaborated to ensure treatment was appropriate and not the initiation of protracted medical care.
By age 10, Joy attended school and was developing normally. Sarah still underwent regular psychiatric and psychological treatment. Sarah was never told the name and the exact nature of her syndrome because of fears that confrontation would result in treatment termination or an escalation of her symptoms that might harm her children. She still denied creating Joy's illnesses, believing that the physicians who did not believe Joy was sick were hostile and wrong. Sarah continued to experience a fair amount of anxiety, particularly around the health of her family. Sarah's husband never became more involved in family health maintenance, steadfastly trusting Sarah and admiring her determination.
Periodically, Sarah attempted to medicalize one of her children, but the medical teams in the clinic and in the hospital were vigilant. They give little weight to Sarah's reports, focusing instead on physical diagnosis and objective measures. In this manner, they were able to deflect Sarah's attempts and focus on the children's health. The positive impact of the ongoing collaboration confirmed the family physician's belief in the necessity of the continuous flow of information between the community medical team and the hospital staff.
Munchausen syndrome is rare. By definition, people with this syndrome believe they are ill and will do almost anything to prove they are correct. They may hurt themselves by injecting toxic substances, harming themselves and convincing the doctors to operate on them, or consuming dangerous medication. A sufferer of this syndrome may demand invasive interventions, exacerbating the condition. The causes of this illness are unknown, but it is thought that these patients have an unusual need for caring and compassionate attention, which they seek by causing themselves actual bodily harm, disability, and self-destruction (Asher, 1951).
In MSP an individual--the mother in 85% of the cases recorded (McClure, Davis, Meadow, & Sibert, 1996; Rosenberg, 1987)--deliberately harms another person (most often his or her own preschool-age child) or convinces others that the person is sick. The parent or caregiver misleads others into thinking that the child has medical problems by lying and reporting fictitious episodes. He or she may exaggerate, fabricate, or induce symptoms. As a result, doctors usually order tests, prescribe medications, and may even hospitalize the child or perform surgery to determine the cause. This syndrome is an especially cruel one whereby the caregiver harms a baby or a child to receive the attention the caregiver him- or herself requires (Diagnostic and Statistical Manual of Mental Disorders, 4th ed., text rev., or DSM-IV-TR; American Psychiatric Association, 2000; Meadow, 2002).
The syndrome often goes undetected because the parent or caregiver appears to be so caring and attentive (Meadow, 1982). The parent demonstrates much concern and personal sacrifice, enduring prolonged medical assessment and treatment protocols patiently, lovingly, and anxiously, all the while sabotaging the healing process and causing further harm to obtain, through the sick child, the treatment he or she longs for him- or herself.
MSP is classified as factitious disorder by proxy in Appendix B of the DSM-IV-TR (American Psychiatric Association, 2000). Criteria include (a) caregiver is motivated by assuming the sick role by proxy, (b) external incentives (such as monetary gain) are absent, and (c) behavior is not better accounted for by another disorder. Mason and Poirier (2007) recommended looking for these warning signs: (a) illness that is multisystemic, prolonged, unusual, or rare; (b) symptoms that are inappropriate or incongruent; (c) multiple allergies; (d) symptoms that disappear when caretaker is absent; (e) one parent, usually the father, absent during the child's hospitalization; (f) history of sudden infant death syndrome in siblings; (g) parent who is overly attached to the patient; (h) parent who has medical knowledge or background; (i) child who has poor tolerance of treatment; (j) parent who encourages medical staff to perform numerous tests and studies; and (k) parent who shows inordinate concern for feelings of the medical staff.
In retrospect, most of these signs were apparent in Sarah's case. The disease was prolonged and intractable for treatment. Sarah assumed all caregiving responsibilities, and Joy's father was passive and absent most of the time. Nurses, volunteers, and even the village neighbors were able to feed Joy easily when Sarah was absent. Sarah assumed the "expert" role on Joy's diagnoses, treatment modalities, and diagnostic procedures.
The diagnosis of MSP is complicated by denial and deceit. Medical professionals must accept parental accounts of children's illnesses because children cannot communicate the information. Although parents typically present valid information, in MSP the parent's accounts are fabricated, often outside of the parent's consciousness. Professionals are likely to miss signs of the disorder because it is so rare and because it takes time and continuity of care to recognize a pattern of such behavior.
Some theories liken MSP to a cry for help on the part of the parent or caregiver, who may be experiencing anxiety or depression or have feelings of inadequacy as a parent or caregiver of a young child (Rosenberg, 1987; Souid, Keith, & Cunningham, 1998). Perpetrators may also be motivated by the social rewards achieved by their caregiver status. Others attribute the syndrome to parents' sense of acknowledgment for being a "good parent" and the accompanying attention (Meadow, 1982).
The parent's or caregiver's inability to see the child as a person with feelings and rights secondary to their own personal needs is a critical aspect of MSP. It has been hypothesized that this intense need reflects the parent's or caregiver's own experience of invalidation. Some theories suggest that a history of abuse or neglect as a child predisposes one to MSP (Homeier, 2005). In Sarah's case, the sense of invalidation likely stemmed from the sexual abuse. Research has indicated that many mothers with MSP also suffer from factitious somatoform disorder (Bools, Neale, & Meadow, 1994).
The safety and protection of the child are the highest priorities in all the treatment phases of MSP. Often, children are placed in safe custody away from the caregiver, with the expectation that symptoms will soon disappear. A team composed of health care staff, social workers, and law enforcement may be necessary to keep the child safe.
Treatment for the caregiver is usually complicated, involving long-term psychotherapy to help the caregiver admit and express his or her need for support. The goal is to prevent the perpetrator from projecting his or her needs onto her child. Therapy also focuses on helping the perpetrator to develop empathy and understand how his or her behavior affects the child. Mothers with MSP very often oppose treatment. They deny the problem and the diagnosis, and many caregivers try to manipulate health professionals involved in their treatment.
In Sarah's case, the obstacles to diagnosis and successful treatment of MSP were as follows:
1. Joy was a premature baby, prone to complications. Her initial presentations may have reflected real symptoms, beginning an escalating process.
2. Joy's multiple hospitalizations results in fragmented care. A large hospital staff provided Joy's care in short bursts, with little continuity between hospitalizations and little communication between the various experts. Many physicians suggested different hypotheses and opinions, resulting in multiple differential diagnostic processes. These various diagnostic processes also escalated the sense of urgency to find the source of her difficulties. In addition, constant staff changes may have minimized any one professional's sense of ownership of Joy's overall care, with each team "owning" care of only one organ system and thus never examining the overall patterns of her symptoms and exacerbations.
3. Underresourced hospital services may have also complicated the diagnosis because they did not have the time to notice or monitor the mother's suspicious behavior. Nurses appreciated Sarah's involvement because it freed them to complete their other tasks. They initially experienced Sarah as kind, helpful, and thankful rather than as intrusive.
4. The medical professionals caring for Joy may have shared a fear of overlooking an important or life-threatening diagnosis. Sarah's insistence that something was wrong fueled further exploration, both to find a cure and to ensure that no possible cause was overlooked.
5. Sarah's own history of sexual abuse may have fueled her need to convince the professionals that something was very wrong. Sarah's own trauma was never really acknowledged by her family--she was not believed to the point that she herself denied the pain she suffered at the hands of her own parents. Her parents were never forced to acknowledge how they hurt her--rather, she was simply sent away. In contrast, medical professionals initially believed her accounts of Joy's illness. As they became suspicious, Sarah had to increase the intensity of her claims to garner greater attention and convince the medical professionals that her daughter was truly sick.
6. The family dynamics of Sarah's own family of origin also complicated diagnosis. In Sarah's family, her father perpetrated abuse and her mother passively allowed it. The larger system did not force her parents to acknowledge the abuse. Rather, they focused on protecting Sarah by sending her away in a fashion acceptable to her parents. Sarah became an abuser, and her passive husband allowed it. Sarah was forced to engage in psychological treatment, whereas Joy's father avoided this intervention. As with her parents, Sarah herself was never able to acknowledge her role in Joy's illnesses. The larger system did not force the issue, focusing instead on preserving the family unit while protecting Joy and her siblings with close monitoring and a closely aligned treatment team.
Ultimately, continuous care by the family physician and the village nurse helped them recognize the pattern and raise their suspicions to the hospital staff. Although the pattern emerged slowly, the professional collaboration revealed the genesis of Joy's symptoms. The team then collaborated to manage Sarah's illness by not reaffirming the perfect mother-very sick baby dyad.
Despite the family physician's and the village nurse's efforts to evaluate the possibility of MSP, diagnosis and treatment did not occur until Joy suffered an iatrogenic complication. Ironically, a disaster forced the professionals to collaborate, leading to the truth. Simultaneously, the staff explored Sarah's own personal story, and how it set the stage for MSP.
Even with ongoing treatment, Sarah was never able to acknowledge her role in Joy's illness. She believes that terminating gastrostomy feeding would have been a disaster if she had not managed Joy's care so carefully. She believes she saved Joy's life. Sarah does not have insight into her difficulties and still tries to medicalize Joy and her other children. The professionals protect the children primarily through close collaboration and by ensuring that Sarah does not obtain inappropriate treatment.
Because MSP is so hard to prove, confront, litigate, and treat, a health care professional must be careful not to participate in the cycle of abuse when they suspect the caregiver is manufacturing symptoms. Professional behavior might harm the MSP victim by ordering more tests and procedures. Ludwig, Harper, McDaniel, and Siegel (2001, p. 129) stated, "When treatment is not possible, it can at least prevent the health care professionals from being unwitting collaborators"
This syndrome is a challenge to family physicians, internists, and pediatricians. Even the most experienced doctors can miss the meaning of the inconsistencies in the child's symptoms. It is not unusual for medical personnel to overlook the possibility of MSP because it defies logic that a parent or caregiver would deliberately hurt his or her child. In addition, it requires close professional collaboration and continuity of care to reveal the syndrome and prevent its harmful outcomes.
American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
Asher, R. (1951). Munchausen's syndrome. Lancet, 1, 139-141.
Bools, C., Neale, B., & Meadow, R. (1994). Munchausen syndrome by proxy: A study of psychopathology. Child Abuse & Neglect, 18, 773-788.
Homeier, B. P. (2005). Munchausen by proxy syndrome. Retrieved June 17, 2008, from http://kidshealth.org/parent/general/sick/ munchausen.html
Ludwig, V. H., Harper, G., McDaniel, S. H., & Siegel, D. M. (2001). A case of factitious disorder by proxy: The role of the health-care system. Diagnostic, Dilemmas, and Family Dynamics: The Harvard Review of Psychiatry, 9, 124-135.
Mason, J., & Poirier, M. (2007). Munchausen syndrome by proxy. Retrieved January 29, 2008, from http://www.emedicine.com/ emerg/topic830.htm
McClure, R. J., Davis, P. M., Meadow, S. R., & Sibert, J. R. (1996). Epidemiology of Munchausen syndrome by proxy, non-accidental poisoning, and non-accidental suffocation. Archives of Diseases in Childhood, 75, 57-61. Meadow, R. (1982). Munchausen syndrome by proxy. Archives of Diseases in Childhood, 57, 92-98.
Meadow, R. (2002). Different interpretations of Munchausen syndrome by proxy. Child Abuse & Neglect, 26, 501-508.
Rosenberg, D. A. (1987). Web of deceit: A literature review of Munchausen syndrome by proxy. Child Abuse & Neglect, 11, 547-563.
Souid, A. K., Keith, D. V., Cunningham, A. S. (1998). Munchausen syndrome by proxy. Clinical Pediatrics, 37, 497-503.
RUTH KANNAI, MD
Ruth Kannai, Department of Family Medicine, Hadassah School of Medicine, Hebrew University.
Correspondence concerning this article should be addressed to Ruth Kannai, MD, Department of Family Medicine, Hadassah School of Medicine, Hebrew University, P.O. Box 12272, Jerusalem 91120, Israel. E-mail: firstname.lastname@example.org
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|Title Annotation:||MEDICAL FAMILY THERAPY CASEBOOK; Munchausen's Syndrome by Proxy|
|Publication:||Families, Systems & Health|
|Date:||Mar 1, 2009|
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