Introduction

Factitious disorder imposed on another (FDIA) is the diagnostic term from the American Psychiatric Association’s Statistical Manual [1]; it has also been described as medical child abuse, factitious illness by proxy, or Munchausen syndrome by proxy (MSP). For the purpose of this review, we will use the term MSP, which is more familiar to the pediatric gastroenterology community. MSP presents a unique diagnostic dilemma for the medical professionals who encounter it, commonly resulting in considerable delay in diagnosis. Health care providers are trained to take a history and rely on that history to guide their evaluation and management. In MSP, the history is usually provided by the perpetrator of the abuse and is specifically designed to mislead medical professionals. The hallmark of MSP involves fabricated or induced symptoms being presented to medical providers, resulting in a flawed evaluation and treatment plan which can include unnecessary tests, procedures, and medications, which are accompanied by their own side effects and needless harm.

Once the condition is suspected, medical providers are often confused as to the best approach to further assessment and diagnosis. This confusion can result in further stress and diagnostic delay, as the belief that a parent may be inducing or fabricating their child’s illness challenges the special relationship that physicians have with families. These cases can be subtle and complex and commonly involve numerous consulting services and multiple healthcare facilities. Patients are often referred to clinics or hospitals with specialized physicians, such as gastroenterologists, neurologists, and pulmonologists. It is important for these specialists to consider MSP if the clinical picture does not fit together,

There is little information available guiding medical staff on how to evaluate these patients, confirm the diagnosis, and treat the child, perpetrator, and family after the diagnosis is made. The best approach, with or without covert surveillance, appears to be one that involves a multidisciplinary team as discussed in this review. After diagnosis, a formal process of follow-up would also benefit these children and families, but is likely often neglected, as suggested by the striking dearth of information regarding the outcomes of these cases.

Literature Review

A review of the literature demonstrates few studies within the last 5 years that explore FDIA or MSP. Most articles are single case reports detailing the complexities of the presentation and the diagnosis [2,4,, 3•, 5•, 6]. Several sources mention a multidisciplinary approach when managing these patients [3,8,9,10,11,12,13,•, 7–14]. The American Academy of Pediatrics published a clinical report about the recognition and treatment of medical child abuse [9••, 13]. They recommend completing a full evaluation of these patients and involving many relevant disciplines throughout the evaluation and management. A task force in the state of Michigan also addressed a collaborative approach to MSP [15]. This document calls for cooperative involvement of child protective services, the child’s primary care provider, consultants, and the medical provider who reviews the medical records, and further emphasizes the need for a multidisciplinary process.

In a study conducted in Turkey, eight cases of MSP were described and a collaborative evaluation was used for each. The team consisted of pediatricians, psychologists, psychiatrists, law enforcement officers, social workers, and child abuse experts [12]. This report did not state how initial concerns of MSP surfaced.

Other publications emphasize early recognition of signs and symptoms and direct observation of patients, in addition to the establishment of interdisciplinary networks within hospitals, and highlight the importance of a multifaceted approach to collect information, corroborate evidence, and maintain the safety of the child [7, 11, 14]. It can be very useful to take the extra time needed to contact health care providers who are seeing the patients outside of the hospital setting. This can best be handled as a team approach involving physicians, forensic nurses, social workers, child protection workers, psychiatrists, and, in some cases, school nurses [3•, 8].

Although the current review does not address the ethical and legal concerns surrounding covert surveillance, others have addressed the controversies surrounding the use of video surveillance and the importance of establishing consistent procedures to manage these cases [8, 16].

Munchausen by the Internet is a separate entity that involves fabricating illness online [17]. The people reported in these cases were often seeking online support groups. They benefitted from remaining anonymous, which allowed them to create false identities and expand upon their fabricated illness. One case report described a mother who posted about her daughter’s illness on a blog that she created. Many parent perpetrators can utilize social media to gain attention, support, and funding. The discussion serves as a reminder to consider these uncommon resources when gathering outside information and evaluating MSP.

Suspected MSP patients commonly present with gastrointestinal signs and symptoms [4, 6, 9••, 11, 12, 14, 18]. These include, but are not limited to diarrhea, reflux and vomiting, failure to thrive, food allergies and food reactions, hematemesis, and hematochezia.

Case Series

We conducted an IRB-approved, retrospective review of all cases of video confirmed MSP at our institution during the 20-year period since covert video monitoring began in 1993 [19]. We identified 36 cases in the 20 years that had been discovered through audio and/or video surveillance. The age at diagnosis ranged from 2 months to 17 years, with a median of 2 years. Sixty-one percent of the victims were under 5 years of age. Fifty-three percent of victims were female, 58% were first born, 91% were Caucasian, and 72% were on Medicaid. There were two sets of sibling victims.

The diagnosis of MSP was rarely considered early in the child’s illness (Fig. 1 [19]). A majority of the children (67%) were initially hospitalized for their MSP symptoms at 6 months of age or younger. Only 5 children were diagnosed on their first admission as infants while another 8, for a total of 13 of 36 (36%), were diagnosed before a year of age. Consistent with the difficulty in making this diagnosis, 31 of 36 cases had multiple hospitalizations prior to diagnosis and it was very common (38% of patients) to have five or more documented admissions at our institution prior to diagnosis. We were unable to review records from outside institutions unless they were incorporated into our charts. Therefore, the total number of admissions prior to diagnosis is likely an underestimate. The average length of stay for each hospitalization at our institution prior to diagnosis was 7 days (range 2 to 30 days). The diagnosis of MSP was rarely considered early on in the child’s illness (Fig. 1 [19]). Sixty-seven percent of patients had symptoms for more than 6 months prior to diagnosis and 28% for more than 2 years. The median time between first hospitalization and the diagnosis in this cohort was 15 months.

Fig. 1
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Age at symptom onset until diagnosis of MSP

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Primary symptoms reported for those diagnosed at a year of age or less were reflux, feeding difficulty, apnea, and seizure-like movements. Symptoms were produced by suffocation, forceful feeding, and induced vomiting. Older children were more likely to be victims of fabrication of symptoms and past medical history, including false claims involving a past medical history of leukemia, muscular dystrophy and mitochondrial disorders, food allergy, or recurrent infections. Most common consequences of MSP were hospitalization, frequent lab testing, and imaging studies. However, there were also more serious sequelae, including a total of 24 procedures and surgeries in 9 of the 36 children prior to diagnosis, comprising multiple endoscopies, 3 Nissen fundoplications, 1 pacemaker placement (and subsequent removal), 5 gastrostomy tube placements, and 3 otolaryngologic surgeries.

Multiple subspecialists were involved in evaluations (Fig. 2 [19]). In nearly two thirds of the cases, pediatric gastroenterology was consulted prior to the diagnosis, and often, the patients were seen by multiple gastroenterologists over time. Pediatric hospitalists and pediatric gastroenterologists were the most likely to be the first subspecialists to raise concern about MSP in many cases and were usually the lead physicians presenting the cases to the multidisciplinary team prior to surveillance. Other consultants included neurology and pulmonology, each in 40 to 50% of cases; in addition to surgery, psychiatry, otolaryngology, cardiology, and allergy, other consulted specialties included genetics, orthopedics, rheumatology, and palliative care (Fig. 2 [19]). On average, nearly three specialty services were consulted per patient.

Fig. 2
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Consultants prior to diagnosis

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The majority of our cases were diagnosed with the aid of video and audio recording. Twenty-seven cases had video confirmation of maternal activities that induced symptoms or fabricated symptoms. Examples of inducing symptoms include video observation of a mother smothering an infant with a blanket or pillow or inducing gagging with her finger or a tongue depressor. Cases in which fabrication of symptoms was detected include reporting symptoms to a nurse or doctor that is not substantiated on surveillance. Three cases were diagnosed based on dramatic inconsistencies in the history provided by the mother with medical records from outside institutions. Three cases were siblings of an index case that had been confirmed on video and had a history of similar symptoms. One case was confirmed by direct observation without video by nursing staff of a mother smothering an infant with a pillow. One case was discovered by a nurse noting that formula prepared by the mother tasted very salty compared to standard formula. One was found by detecting a controlled substance in the urine of a child that had been prescribed for the mother and not the child.

All of the abusers in our series and in the vast majority of cases in the literature have been mothers. Our process involves contacting the Division of Family and Children Services (DFCS) and the police department at the time of diagnosis and prior to confronting the perpetrator. Once the diagnosis is made, the mother is confronted by a member of the child advocacy team along with security and a social worker from DFCS. All children in this series were initially separated from the mother. Subsequent decisions to maintain separation or reunite the family were made in the court system. Unfortunately, once the child was discharged from the hospital, documentation of follow-up was often lacking. Despite being high utilizers of the medical system prior to diagnosis, less than half of the patients had another single encounter at our institution after the diagnosis. This could be explained by the children being truly healthy and not in need of specialty care once separated from the abuser. Many children were ultimately placed with other family members who may choose not to follow up with our institution. The lack of subsequent encounters could also be indicative of the children being moved to a different state or region. Our review makes it clear to us that a more formal process for follow-up of these children is important.

Multidisciplinary Process

We believe that it is very important to approach MSP systematically. A multidisciplinary team is critical to making the diagnosis of the disorder and in providing definitive data to outside services such as child protective services, law enforcement, and the court system. Although covert video surveillance is not the gold standard in diagnosis, we have found that in some cases it provides the most indisputable evidence, aiding in making the diagnosis and protecting children from further harm. Video surveillance can also exclude MSP in certain cases. The process of instituting this methodology requires collaboration between the hospital’s legal and medical team to determine the legal and ethical basis allowing for this type of monitoring. In order to continuously meet these legal and ethical requirements, we operate as a collaborative team that is required to meet and review cases prior to any decision to monitor. When setting up a multidisciplinary hospital MSP review team, we recommend including all personnel that will assist in making the decisions to begin and continue video surveillance. Important disciplines to consider for the team include the hospital legal department, risk management, the primary medical team, child advocacy physicians, hospital security, social work, and nursing staff, specifically floor nursing supervisors and the bedside nurse (Table 1). Some institutions find it helpful to have a smaller core team that meets initially to discuss the decision to initiate surveillance. Once the decision to record is made, the full team is included to discuss the practical issues that surround starting, continuing, and ending the monitoring process.

Table 1 Multidisciplinary team for medical child abuse
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The initial meeting regarding a specific patient involves the medical provider, who is bringing forward the concern for medical child abuse, presenting the clinical picture to the core team. At this level, detailed information should be provided regarding how the child presented, what has raised the concern about MSP, results of current and previous evaluations, and inconsistencies among information provided, symptoms reported, and what has actually been observed. The core team should understand the clinical picture and determine whether there is enough information or concern to justify moving forward with covert observation. It is essential to have a discussion about possible alternative medical explanations for the presentation that may require additional testing and whether there are alternative methods of diagnosing MSP that do not require video surveillance. Additional considerations include the health consequences of ongoing medical interventions and the safety of the child. It is imperative that the presenting clinician corroborate the history from outside sources, such as the outpatient primary care physician and other emergency departments or hospitals that have provided care. By the time that the diagnosis is being considered, many of the children have received care from multiple providers and it can be vital to review these outside records for clues, inconsistencies, or overlooked medical diagnoses. In some cases, there are additional tests that the committee recommends obtaining prior to monitoring, to exclude a clinical diagnosis that is still high in the differential diagnosis. In this situation, the plan is often to reconvene when there is more information or even to decide against monitoring, allowing for more information to be gathered by the medical team.

In advance of monitoring, policies need to be in place regarding the actual process of monitoring. Details should include which staff members will be providing continuous live observation of the video being recorded 24 h a day. It is critical to have staff observing in real time to allow an opportunity for bedside staff to be notified immediately and intervene in life-threatening events. In some institutions, this live-observation staff comes from the security team; others may choose members of the nursing team. This team should be organized, trained, and adequately staffed so that live monitoring can be sustained in shifts. During the course of monitoring, we believe that it is crucial for the full team to meet regularly to discuss observations, inconsistencies, and the plan for continued management of the patient. Once monitoring has commenced, covert surveillance should continue until the patient has been discharged from the hospital, or the diagnosis of medical child abuse is confirmed, at which time the patient can be moved and surveillance can be discontinued. In our experience, it has not been uncommon for events to occur on the last day of admission once the parent is informed of a pending discharge after several days of no observed problems.

In situations where there is a reasonable suspicion of medical child abuse that would potentially warrant observation, the discussion should also include specific things that the observation team, in our institution security staff, should try to focus on or understand to be a trigger for concern. For example, in a child who frequently presents with respiratory distress, apnea, bradycardia, or oxygen desaturations, particular attention to the child’s face may be warranted. In a child with reported severe reflux or frequent vomiting, one might observe a caregiver pouring formula onto the bed or using a device to gag the child. A child who frequently presents with concerning symptoms at home, but is always directly observed to be well in the emergency department or during previous hospitalizations, may not yield any diagnostic or helpful observations during a current admission. Audio surveillance of what a parent may be saying over the phone or review of postings on social media during the admission may provide important information leading to the diagnosis.

In the event that a diagnostic event occurs during the course of surveillance, the team should be prepared to make reports to law enforcement and child protective services. At times, there may not be enough information that rises to the level of a police report, but a report to child protective services is warranted. Child protective services workers review the information and determine if separation of the child from the caretaker is indicated. In some cases, this may allow for the true medical picture to be made clear. We have had cases in which we were able to wean children from multiple medications and challenge with oral feedings or an expanded diet after separation. During this time, medical management can be based on objective information from the medical staff rather than subjective information that has been provided by the suspect caregiver. In our experience, this can sometimes be dramatic, as in the case of one infant who went from being an orally defensive, nasogastric tube-dependent infant with severe reflux on an amino acid-based formula, to a happy, orally fed infant on a standard formula within 48 h of separation.

It is vital to have a good understanding of the state code and laws surrounding child abuse, including the definition of child abuse and any state mandated response. It may be helpful to work closely with child protective services in outlining what the proper response should be in cases of reported medical child abuse, as these cases are much more complex than a child presenting with a fracture, bruise, or medical neglect. When creating a new MSP or medical child abuse protocol in an institution, it is important to provide education about the topic and protocol for all of the staff that are on the multidisciplinary team or who may have a role in the monitoring process. Finally, some thought must be given to the equipment utilized. There are multiple audio-visual systems that can be employed. Much care should be given to the type of equipment used, how conspicuous the monitor will be in the room, and the audio and visual clarity that the video will provide.

Conclusion

Munchausen syndrome by proxy, also known as medical child abuse or factitious disorder imposed on another, is a condition that provides a unique diagnostic challenge for many medical professionals. Pediatric gastroenterologists are often uniquely positioned as the most common consulting service and should consider the diagnosis when historical aspects are not consistent with clinical observations. The diagnosis is challenging and frequently delayed. There are virtually no published follow-up outcome data available on these highly vulnerable patients, an important area for future research and modifications of care. In our experience, audio and video surveillance used within an ethical and legal framework is a critical diagnostic tool. A multidisciplinary approach provides the best opportunity to evaluate these cases, determine if there is indeed abuse occurring, document the abuse, and focus on the health and safety of the patient.