Munchausen by proxy syndrome (MBPS), first described in 1977 by Professor R. Meadow,[1] is a form of child abuse in which a parent, usually the mother, systematically fabricates information about their child's health or intentionally makes the child ill.[2] Some of these child victims die at the hands of their mothers. The majority suffer a degree of physical and psychological damage, either from outright harm or from painful procedures, unnecessary medications, or hospitalizations ordered from unwitting physicians.[3] This form of abuse differs from other forms of child maltreatment in several ways: the perpetrator is almost always female and usually presents as a model parent, there is little or no indication of family discord, and the abusive behavior is clearly premeditated, not impulsive or in reaction to the child's behavior.
Although the medical consequences of MBPS have been well described,[3] there are few articles that describe the long-term psychological impact of MBPS on its victims.[5-8] Only one article describes MBPS victims as adults.[9] To date, there is no detailed published account of what it was like to grow up in a family where the mother systematically induced serious illness. This article chronicles the actual experiences of a MBPS victim(a) through 8 years of medical abuse at the hand of her mother. The medical history, obtained from original medical records and notes from the primary physician (J. Scholl. Notes covering the medical course of the case between 1961 through 1964, personal communication, 1993), details the hospitalizations, procedures, and medications resulting from the mother's abusive behavior. Subsequently, the victim's account of what happened to her and depictions of what her family was like is described. The specific passages that illustrate the warning signals and significant aspects of the disorder associated with the MBPS are in italics. We conclude with suggestions to help health care providers recognize and treat children victimized by this form of child maltreatment.
THE MEDICAL HISTORY: THE DOCUMENTED
TRUTH
In the summer of 1961 a 2-year-old girl was referred to an orthopedic surgeon because a trivial injury to the right ankle had not healed. Examination revealed mild swelling with no laceration or evidence of a fracture. The leg was splinted. Over the next 4 months the swelling continued and the child began to have spiking fevers. Two castings of the leg and a course of antibiotics did not totally resolve the problem. A hematologist was consulted and diagnosed mild thrombosis. A bone biopsy was done. The pathology report described evidence of reactive fibrosis and hemorrhage, cause unknown. Repeated radiographs revealed no evidence of osteomyelitis. The hospital record indicates a total of 28 hospitalizations, 24 surgeries, multiple blood transfusions, dozens of radiographs, several incision and drainage procedures, as well as skin and bone grafts. Numerous courses of different antibiotics were used. Temperatures were frequently recorded in the 103 [degrees] to 105 [degrees] F range. One report indicated the child was hospitalized after a febrile seizure at home. After each discharge from the hospital, the child was closely followed as an outpatient with various and continuous medications; yet she continued to have spiking fevers.
Between the ages of 2 and 4, the infection was limited to the right leg. The initial diagnosis was cellulitis. Eventually, this became chronic osteomyelitis, although the child never followed a typical course and repeated radiographs never revealed evidence of osteomyelitis. Several incision and drainage procedures were performed because of frequent temperature spiking and swelling. Response to antibiotic therapy was poor. Eventually, irrigation tubes for antibiotic treatment were inserted in the tibia.
At age 4 and weighing 24 pounds, the child suffered a spontaneous spiral fracture of the right femur while in the hospital. The medical records for this hospitalization show the mother's handwriting on the nursing notes, medication sheets, and intake and output records. The child was discharged home in traction with a pin through her right heel. For the next 7 years the pin tract remained infected and drained continuously. Amputation of the right leg was considered and discussed with the parents after informal consultation with a physician from another hospital. The infection responded to the next course of antibiotics.
When the child was 5, the left limb became involved after a fall while playing. A cast for a broken left wrist was placed at the physician's office. One week later the wrist was severely swollen and required an incision and drainage procedure. There was evidence of infection but radiographs were negative for osteomyelitis. The wrist responded to antibiotic therapy over the next several months of treatment.
At age 6, the third limb was involved and the child presented with what appeared to be cellulitis of the right arm. Radiographs revealed no evidence of osteomyelitis. Two incision and drainage procedures were performed over the following 3 weeks and the severe temperature elevations dropped. Cultures again revealed bacterial infection and a course of antibiotics was initiated. At age 7, the child was brought to the emergency department with skin slough on her arm. The skin defect involved three quarters of the right arm and there were contractures of the elbow. The infection persisted for another eight months and there was significant loss of muscle mass. Two skin grafts were performed over the next few years but motion still remains restricted. At some point in time when the child was 8 years old, the left leg also became infected. The medical record indicates that the physician remained puzzled as to how the osteomyelitis traveled from the right to left leg.
When the child was 10 her medical condition dramatically improved. Three corrective surgeries were performed over the next 4 years; one to repair the right tibia, another to correct an internal foot rotation, and the third for skin grafting to the right arm. No further incidents of osteomyelitis occurred. Height and weight remained at or below the fifth percentile until midadolescence. Final adult height and weight falls in the average range.
MY STORY: THE PAINFUL TRUTH
I was raised in a small college town in the Midwest. I was the middle child, with a sister 20 months older and a brother 7 years younger. My mother was a registered nurse with a bachelor's degree. She did not work until I was a teenager. My father never completed college. He worked for a pharmaceutical company and did carpentry work on the side. We lived with my grandmother, who was a microbiologist and worked for the same company as my father, in a middle-class neighborhood.
The first page of my 400-page medical record begins when I was 2 years old; the year was 1961. My parents reported that I had fallen down a flight of stairs and twisted my right ankle. Six weeks after the incident I was still limping, my foot was swollen, and there was a large bruised area over my ankle. Our family physician made a referral to an orthopedic surgeon who was to become my primary physician for the next 8 years.
An initial diagnosis of cellulitis was made. After several weeks of not responding to antibiotics, an incision and drainage procedure and biopsy were done of the area. The results of the report read "sections of periosteum exhibit chronic inflammation with fibrosis and old hemorrhage. No evidence of specific etiologic agent." What the physicians who were treating me didn't know was the injury to my ankle was no accident; the cause -- repeated blows with a hammer by my mother.
My earliest memory of abuse is between the ages of 2 and 3. I was in the high chair with the tray pulled tightly to my chest. I could barely breathe, let alone move. My left leg was tied to the leg of the high chair with a dish towel. My hands were bound to prevent me from pulling at my mother's hair. She was very angry at me for fighting her. Her words were always the same and repeated frequently over the next several years: "I'm doing this for your own good. The doctor wants me to do this treatment to make you better." As the blows of the hammer were hitting my foot all I could understand was the pain. I tried hard to escape her grasp. This made her even more angry. "If you don't hold still, it will take even longer." I came to believe it was my fault she was angry. I was not a good girl. I needed to try harder to please her so she would love me.
