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Child maltreatment occurs along a spectrum and can take many different forms, including child neglect and medical child abuse (MCA). Children can be harmed by excessive and unnecessary medical interventions, as well as by withholding of medical care and failure to provide for their basic needs. Although MCA is vastly different from child neglect, both forms of maltreatment place the child at significant risk for immediate and chronic morbidity, as well as for increased mortality. In order to recognize abuse and protect the child involved, medical providers must be knowledgeable about the various forms of maltreatment and include them in the differential diagnosis. When maltreatment is suspected, they should be prepared to refer families for evaluation by Child Protective Services.
Image courtesy of Wikimedia Commons.
MCA, previously known as Munchausen syndrome by proxy,[1] was first described by Sir Roy Meadow in 1977 as "parents who, by falsification, caused their children innumerable harmful hospital procedures." The name Munchausen was first attached to the syndrome by Richard Asher, whose description of it was published in The Lancet in 1951. This new eponymous diagnosis was inspired by the 18th-century English best-seller Baron Munchausen's Narrative of His Marvellous Travels and Campaigns in Russia, whose fictional protagonist was loosely based on Baron Hieronymus Karl Friedrich von Münchhausen. The book contains comedic tall tales about the implausible exploits claimed by the Baron, such as riding a cannonball, fighting a 40-foot crocodile, and traveling to the moon. More recently, this form of child abuse in the medical setting was defined by Flaherty as "a form of child maltreatment caused by a caregiver who falsifies and/or induces a child's illness, leading to unnecessary and potentially harmful medical investigations and/or treatment."[2]
Image courtesy of Wikipedia.
No specific individual symptoms are associated with MCA; a broad range of presentations may be seen. However, certain patterns of caregiver behavior and disease development are common. Frequently, the histories are inconsistent, remarkably complicated, and quite difficult to follow, with care scattered across multiple institutions. Additionally, some caregivers may fabricate, exaggerate, or falsify symptoms, whereas others may go on to induce symptoms in the victim. This caregiver behavior, by both adversely affecting the child and misleading the physician team, may impede the development of a clear management plan and ultimately give rise to chronic treatment complications for the child. Abusive caregivers manipulate all systems of which they become a part, including not only health care systems (usually several) but also school, community, and support group networks.[3]
Common findings of MCA include the following:
Image courtesy of Medscape.
A 4-year-old girl is brought to the emergency department (ED) for evaluation after a recent month-long hospitalization. Her mother, a nurse, explains the child's complex past medical history, which includes eosinophilic colitis, gastrointestinal (GI) dysmotility, failed gastrostomy tube and gastrojejunostomy (GJ) tube feeding regimen trials with multiple episodes of tube displacement, and, ultimately, dependence on total parenteral nutrition (TPN), resulting in the placement of several central lines over time. The patient presents with vomiting, diarrhea, and lethargy and is found to be hypotensive and febrile (103°). Her recent hospitalization was for septic shock caused by a central line infection; she was discharged in stable condition less than 24 hours before the current presentation.
Although a gastrostomy tube is in place, the patient has been unable to tolerate feedings (reported complaints of distention, pain, and vomiting), even with a flow rate as low as 5 mL/hr. She does not take any food or drink orally, though she will occasionally lick ice cubes. She has been receiving TPN through her central line, but this has been complicated by frequent line removal and replacement because of infections. She has had six infections in the past 3 months, during which time cultures grew unusual bacteria, often with multiple organisms growing from a single blood culture. Despite the need for admission to the intensive care unit (ICU), the patient's mother is most strongly focused on the idea that further immunology workup is needed for an immunodeficiency that presumably led to the multiple infections, and she repeatedly insists on confirming the referral for a subspecialist evaluation.
Which of the following forms of child maltreatment should be included in the differential diagnosis?
Image courtesy of Marcella Donaruma-Kwoh, MD.
Answer: C. MCA.
This patient is her mother's only child. The two live alone and frequently go on outings with a "mom group" who all met at the same birth hospital years before. Frequent mention of the child's illness, hospitalizations, and procedures, including in-hospital pictures, are visible on a social media page, and other mothers express compassion and support for what this single mother is going through with her chronically ill daughter. In MCA cases, it is common for caregivers to engage the social media community in discussing the medical condition of the victim as a form of attention seeking, and the discussion is often accompanied by purposeful distortion of the medical information.[4] Over time, caregivers often relay an escalation in illness severity to their online community, regardless of whether any such escalation is actually taking place. Caregivers may also contact online donation sources or "wish" organizations, unbeknownst to their medical teams. This use of internet attention lures the community into participation, propagation, and support of the child's "illness."
Which of the following is most often the case with regard to caregivers of children thought to be possible victims of MCA[5]?
Table courtesy of Paige Culotta, MD, based in part on Brown AN et al.[4]
Answer: B. The caregiver has a history of multiple medical diagnoses that cannot be confirmed by medical testing.
Although the statement in answer B is most accurate in terms of being frequently true of caregivers of children who are victims of MCA, it is not required to make the diagnosis. In fact, one of the challenges of this diagnosis is that there is no specific parent, child, or medical history profile that can decisively establish or rule out MCA. Nevertheless, there are common themes that resonate across this population. Although mothers are most commonly the abusers in cases of MCA, this form of maltreatment is also perpetrated by fathers, stepparents, grandparents, and other caregivers. Typically, the expected coparent or child-raising partner is absent, as in this case, or else has little involvement in child care because of work or health circumstances. One of the proposed explanations for the abusive behavior is that it represents an attempt to gain the attention of a partner who is inattentive to the caregiver, the child, or the family as a whole. Regardless of the motivation behind the caregiver's behavior, it is vital to keep in mind that it is the child who is a victim of abuse because of the adult's deception of the healthcare system.
Abusive caregivers frequently have professional training in the medical field, which lends them some credibility as historians even when the histories are far-fetched. Offending caregivers also seek out attention and empathy from hospital staff and other patient families, behavior that can easily mimic the actions of devoted parents embracing a community and advocating for a truly ill child. The secondary gain of praise and admiration is thought to be a motivator for ongoing abuse. A key behavior that distinguishes these abusers from truly concerned parents is that they lavish attention on the child when others are present and essentially ignore the child in private. This behavioral pattern is not readily detectable on rounds or in the hospital hallways; most often, it becomes apparent to observant therapy providers and nursing staff members who are unfamiliar with the child's history (and thus have no favorable preconceptions of the perpetrator as a devoted caregiver) or, more concretely, under circumstances such as video electroencephalography (EEG) monitoring.
Which of the following symptoms do caregivers who perpetrate MCA commonly report to the medical staff?
Table courtesy of Paige Culotta, MD | Icons.
Answer: D. All of the above.
The subspecialties commonly involved in MCA are those in which diagnosis of illness and treatment of symptoms are largely dependent on the history provided by the family (eg, vomiting, feeding intolerance, seizures, or allergic reactions). Because these symptoms may not be directly observed by physicians or nurses at the point of patient contact, healthcare providers tend to rely on the caregiver to provide accurate information. In the setting of MCA, this traditional system enables the abusive caregiver to perpetuate inaccurate depictions of the patient's ill health, as well as to vary the actionable information from provider to provider.[2] Often, diseases that are difficult to diagnose or disprove definitively are latched onto with great enthusiasm. Upon closer observation, healthcare providers find that the reported symptoms are not witnessed during the hospitalization. They also find that the history does not follow an expected clinical pattern and that the presumed illness does not respond to conventionally effective treatments. When presented with medical test results that are within normal ranges and invasive procedures that yield unremarkable findings, abusive caregivers typically persist with the original history and may even embellish it further. They insist that the testing is inaccurate or that a procedure needs to be repeated, and they perpetuate the abusive pattern of "doctor shopping" for additional medical opinions to obtain increased medical intervention
Image courtesy of Paige Culotta, MD.
Chart review of the 4-year-old girl described in slide 4 reveals a disturbing timeline of medical encounters. At 2 months of age, she was presented to care for spitting up and poor weight gain. Continued hospital visits and monthly procedures to evaluate vomiting followed, including orotracheal intubation, upper GI endoscopy, swallow study, and gastric emptying (all of which yielded normal findings, aside from mildly delayed emptying). At 13 months, a gastrostomy tube was placed for poor feeding. At 14 months, poor tolerance of tube feeding was reported. At 16 months, persistent vomiting was reported, and the gastrostomy tube was converted to a GJ tube. At 17-18 months, the GJ tube was frequently found to be displaced, and it had to be replaced three times. At 21 months, endoscopy and colonoscopy with biopsies were performed. At 2 years, full TPN was indicated, and a central line was placed. At 26-29 months, frequent central line infections were reported (with unusual bacteria found, both oral and fecal), and multiple line replacements were performed. At 3 years, continued infections prompted concerns about a possible immune deficiency. At 38 months, the indwelling line remained, and a new and significant normocytic anemia was noted that necessitated blood transfusions to keep hemoglobin above 8 g/dL. From that point up to the current presentation, multiple admissions for fever and vomiting occurred.
The details of this case lead to consideration of MCA as a unifying diagnosis for the patient's many problems.[2,6] Which of the following is/are the best next step(s)?
Image from MBI | Dreamstime.
Answer: B. Enlist assistance from a pediatrician who specializes in child abuse.
In cases of suspected MCA, it can be helpful to enlist the help of a child abuse pediatrician if one is available. Thorough review of all medical records and careful documentation of the timeline of events are critical for clarifying the illness pattern, identifying historical inconsistencies, and detecting potential duplication of care at additional institutions. Although this process can be time-consuming, given that this patient population typically has had numerous contacts with healthcare systems, it must not be given short shrift: The diagnosis can be missed, or misunderstood, if this detailed evaluation is not completed.
Although difficulty with feeding and weight gain has been repeatedly reported by the 4-year-old patient's mother since her daughter was 2 months of age, her weight has remained largely stable around the 50th percentile for the majority of her life (see the growth chart in the slide). Caregivers who perpetrate MCA commonly misrepresent medical information; thus, it is vital to compare the information provided by treating physicians in the medical records (eg, test results, medication prescriptions, and medical impressions) with the history presented by the caregiver. Because medical providers in pediatrics are trained to trust that caregivers know their child better than anyone, they rarely question the histories that caregivers provide. To add to the clinical difficulty of assessing patients who have been subjected to MCA, 30% of MCA victims have a true underlying medical illness in addition to their numerous false diagnoses, a circumstance that further muddies the clinical presentation in this subpopulation.[2,5,7]
Image courtesy of Paige Culotta, MD.
When a diagnosis of MCA is suspected, several additional steps are warranted.[3,6,8,9] First, multidisciplinary team (MDT) meetings, including the child's primary pediatrician and all subspecialties actively involved in the child's care, should be held to discuss the case, with the goal of arriving at a consensus on the diagnosis. Second, whenever possible, an expert in the field of child abuse and maltreatment should be consulted for assistance in chart review and interpretation, as well as for participation in the MDT. Third, Child Protective Services should be called to ensure the child's safety. According to the judgment in Alvarez v. Anesthesiology Associates, 967 S.W.2d 871 (Tex.App.—Corpus Christi 1998), "Doctors and other health care professionals have an affirmative duty to report suspected abuse. The law does not require them to be certain abuse has occurred before they report, but merely 'to have cause to believe.' Given the language in the statute and the burden imposed by it, we believe physicians should be afforded deference in reporting such matters."
When child abuse or neglect has been discovered, how can medical providers most appropriately respond while complying with HIPAA?
Image from Ee Von Teh | Dreamstime.
Answer: A. Proceed with reporting; this is not a HIPAA violation, because there is concern for the child's safety.
To request an MCA consult without the parent's knowledge or to discuss the patient with Child Protective Services and law enforcement is not a HIPAA violation. Providers are protected because such disclosure of information is for the purpose of child safety and protection. An exception to the privilege of confidentiality exists when (1) the disclosure is required or authorized by law to a governmental agency or (2) the physician determines either (a) that there is a probability of imminent physical injury to the patient, the physician, or another person or (b) that there is immediate mental or emotional injury to the patient. Consultants are involved to assist the referring provider in the diagnosis and treatment of the child.
Suspected MCA necessitates some departure from the trust and transparency emphasized by medical training. The MDT's involvement of state Child Protective Services in a case of MCA must be covert until the team and agency workers are ready for definitive confrontation. The caregiver's abuse can continue while the child is in the hospital, even under close monitoring in an environment such as the ICU. When perpetrators discover that their behavior is under suspicion, they may escalate their abusive behavior and symptom induction in an effort to "prove" the child's illness, thereby placing the victim in the path of imminent harm. Covert evaluation of MCA protects the child from fatal escalation of abuse.
HIPAA's minimum necessary standard states that reasonable efforts should be made to limit the amount of protected health information that the physician uses or discloses to the minimum necessary to accomplish the purpose of the use or disclosure.[10] This standard does not apply when a provider either discloses information to another provider for treatment purposes or requests information from another provider for treatment purposes. Thus, it should not interfere with a physician's ability to provide appropriate treatment. It is important to be aware of state laws regarding HIPAA and mandated reporters of child abuse and neglect.[11] In some states, failure to report suspected maltreatment could render a healthcare provider liable to misdemeanor charges.
MCA can be confirmed by means of the so-called separation test, in which a suspected victim undergoes a therapeutic separation from the suspected abuser. In a therapeutic separation, the child remains under close medical surveillance without any contact with his or her caregiver; this allows direct observation and communication to flow between the child and the medical team, without the interference of the filter imposed by the abusive caregiver. If the previously reported symptoms are absent and the child's medical condition significantly improves during the therapeutic separation, the diagnosis of MCA is confirmed.[2] Covert video surveillance may be another way of monitoring for suspected inappropriate actions by a child's caregiver.[12] Such surveillance must be carefully planned to ensure that a trained professional is constantly present to monitor the video system, in real time without relay delay, so that he or she can intervene before any harm comes to the child. A disadvantage of this method is that the victim remains in an unsafe environment and at risk for further harm; accordingly, it remains controversial.
Image from Tatyana Gladskikh | Dreamstime.
MCA is a serious condition that has major adverse outcomes.[2,7,8,13-16] Morbidity is 100%. Mortality is as high as 75%, with the risk of death being greater for young infants (0-6 months) and in circumstances where parents induce symptoms (eg, suffocation). Siblings are commonly victims of MCA as well. Children who have sustained MCA may develop chronic invalidism because they accept the "illness" and believe themselves to be disabled and unable to attend school, work, or even walk. Older children may participate in the deception because doing so is a behavior that was learned from and expected by their caregiver, whom they love. In adulthood, the child may develop Munchausen syndrome (factitious disorder imposed on self) as a consequence of having learned and assumed the lying behavior of the abuser.
Image courtesy of US Department of Health and Human Services Administration for Children and Families Administration on Children, Youth and Families Children's Bureau.
The 4-year-old MCA victim described in slide 4 was abused by a caregiver who was driving an overabundance of unnecessary health care intervention. She experienced pain, received unneeded treatments for nonexistent pathology, and was placed at risk for complications with repeated invasive medical procedures, all because of her mother's actions. This is one side of the coin; the other side is that children can also suffer abuse through the failure of their caregivers to seek necessary medical care or to provide for their basic needs.
Image courtesy of Marcella Donaruma-Kwoh, MD | Robert Byron | Dreamstime.
More children suffer from neglect than suffer from any other form of abuse.[17] Multiple definitions can be found describing this type of maltreatment.[11,18] The Child Abuse Prevention and Treatment Act defines it as "at a minimum, any recent act or failure to act on the part of a parent or caretaker, which results in death, serious physical or emotional harm, sexual abuse or exploitation, or an act or failure to act which presents an imminent risk of serious harm".[19] The Department of Family and Protective Services defines it as "failure to provide for a child's basic needs necessary to sustain the life or health of the child, excluding failure caused primarily by financial inability unless relief services have been offered and refused." The Centers for Disease Control and Prevention (CDC) defines it as "any act or series of acts of commission or omission by a parent or other caregiver (e.g., clergy, coach, teacher) that results in harm, potential for harm, or threat of harm to a child."[20]
Child neglect can be seen in many forms, which may be broadly categorized as either failure to provide or failure to supervise. Failure to provide can be subcategorized as follows:
Failure to supervise ("failure by the caregiver to ensure a child's safety within and outside the home given the child's emotional and developmental needs") can be subcategorized as follows:
Image courtesy of Paige Culotta, MD | US Department of Health and Human Services Administration for Children and Families Administration on Children, Youth and Families Children's Bureau.
A 2-year-old girl is brought to the ED by ambulance with a minimal history of present illness. Investigators ultimately determine that she had been left by her mother with a family friend some months ago. However, the mother was unexpectedly arrested and thus was unable to return for the little girl after the dropoff, as well as out of communication. When the mother was released more than 6 months later, she returned to track the whereabouts of her child. The current caregiver refused to allow her to see her daughter, prompting the mother to call 911.
On physical examination, the patient weighs 16 lb (z-score, –4.5) and is 84 cm tall (z-score, –1.9). The following characteristic physical findings of protein-calorie malnutrition are apparent (see the image in the slide):
She also has skin changes indicative of zinc deficiency and coarse, sparse hair.
Patients with severe malnutrition are at risk for refeeding syndrome upon initiation of appropriate nutrition and thus must be refed slowly and cautiously. Refeeding syndrome can result in dangerous electrolyte shifts, resulting in hypophosphatemia, hypokalemia, and hypomagnesemia, which may result in cardiac arrhythmias and neuromuscular abnormalities. This warrants observation with telemetry.
Image courtesy of Marcella Donaruma-Kwoh, MD.
Offending caregivers rarely recognize or prioritize the abused child's medical needs. Accordingly, neglected children are often brought to care with other acute complaints or are referred by teachers or relatives who become concerned for the child's well-being. Although failure to thrive (FTT) in childhood has a variety of causes, it can be a manifestation of neglect, as in this case.[21] In this scenario, an infant or child becomes malnourished even to the point of death as a result of neglect by the caregiver. The differential diagnosis includes the following:
In the United States and worldwide, poverty is the single greatest risk factor for FTT. Families' lack of resources and lack of access to necessary nutrition may lead to inadequate caloric intake by their children. This is not abuse. If, however, families are provided with the resources to alleviate food insecurity but fail to use those resources to benefit their children after repeated support and recommendations from a healthcare provider, the possibility of neglect should be considered. A pediatrician must keep all of these potential issues in mind when evaluating a child who has had difficulty gaining weight or is actively losing weight.[22]
Extensive medical evaluation identifies no organic cause for this 2-year-old child's wasting, and she successfully gains weight with inpatient feedings. At this point, what potential chronic health problem(s) should her primary care provider keep in mind for the future?
Image courtesy of Marcella Donaruma-Kwoh, MD.
Answer: C. Obesity.
Shortly after admission, the patient was eating well. She quickly gained weight (23 lb at discharge—a gain of 7 lb in 10 days). Development was delayed for her age; she had a limited vocabulary (only three or four words) and communicated primarily by gesturing or pointing to desired objects. In outpatient follow-up, the foster mother reported concerns that the child was "constantly" eating. Over the long term, the patient continued to focus on food, seeking it throughout the day, eating every 10-15 minutes, and even perseverating on pictures of food. At one follow-up appointment, she was distracted throughout the entire examination, constantly looking through various bags in her stroller for food and eagerly devouring raisins and Oreos. She showed aggression around food, slapping the examiner's hand during an office visit and clearly saying "no" when an attempt was made to move food away so that she could be repositioned for a checkup. She also exhibited food-hoarding behavior, hiding food under her bed. At 1-2 years after the ED admission, she was above the 95th percentile in weight for age, with a body mass index (BMI) in excess of 21. (At age 3 years, a BMI of 15.6 represents the 50th percentile.)
Image courtesy of Centers for Disease Control and Prevention | Marcella Donaruma-Kwoh, MD.
In this case, the unwilling caregiver turned abuser of the 2-year-old girl had two other children (a 14-month-old boy and a 3-year-old girl) who were both well cared for and well nourished, at the 50th percentile in both weight and height for age. It is not uncommon for one child to suffer from abuse or neglect while others in the same home are spared.[23] In more than 40% of families with abused children, the index child is scapegoated. This scapegoating can begin with the perception of a difference from the other children in the home, which jeopardizes the caregiver's self-image as an ideal caregiver. The caregiver's stress then increases, and the child is targeted to achieve submission, release frustration, or both. In some cases, there is a trait that sets one child apart from the others—for example, the child may be more sensitive or more vulnerable, may have a mental or physical disability or illness, or may have a developmental delay. Other factors can play a role in scapegoating as well, such as the child's sex, birth order, status as a stepchild or a product of infidelity, or possession of certain similarities to the caregiver that are seen as a threat. Frequently, however, the motivation for the scapegoating is unclear. Siblings often side with their caregiver rather than with the abused child and join with the abusive adult in blaming the victim for the victimization. This lack of empathy for the abused child can elevate the other siblings' status within the family and give them a feeling of safety.[24]
Image courtesy of US Department of Health and Human Services Administration for Children and Families Administration on Children, Youth and Families Children's Bureau.
A paraplegic 15-year-old boy has a history of spina bifida and progressing scoliosis. Both he and his mother have repeatedly declined spinal fusion surgery despite encouragement from the neurosurgeon. The patient's fixed positioning, due to the progressive spinal deformity and to his and his mother's lack of attention to daily care, has predisposed him to severe pressure ulcers and the ensuing complications. This poor decision-making on the part of both parent and child has resulted in a significant risk of infection, amputation, heart failure, and even death. The images in the slide show the necrotic femoral head disarticulated and prolapsing through the eroded ulcer base. This can be considered an instance of medical care neglect. Such neglect can take the form of failure to notice obvious signs of illness, failure to follow physician's instructions that align with known standards of care (as in this case), or failure to provide recommended medications whose benefit outweighs the risk of potential harm occurring in a setting where access to healthcare is available and not utilized.
Image courtesy of Marcella Donaruma-Kwoh, MD.
Children are subjected to various stressors, both positive and negative, all of which can have a tremendous impact on their future mental and physical health, as well as life opportunities. Positive stressors (eg, the first day of school) are short-lived experiences through which children learn, with parental support, how to manage and overcome the stress these experiences impose. Learning coping mechanisms to deal with life stressors is a critically important part of the developmental process. Tolerable stressors are more intense but still relatively short-lived (eg, divorce). With support, these too can be overcome, but without support, they can become toxic and lead to long-term negative health effects. Toxic stressors are intense adverse experiences that may be sustained over a long period (eg, interpersonal violence). Children cannot effectively manage this type of stress on their own.
Adverse childhood experiences include psychological abuse, physical abuse, sexual abuse, neglect, and living in a dysfunctional environment (eg, interpersonal violence, mental illness, or drug use). They have been linked to a number of undesirable consequences, including severe obesity, diabetes, depression, suicide attempts, sexually transmitted infections, heart disease, cancer, stroke, chronic obstructive pulmonary disease, broken bones, lack of physical activity, smoking, alcoholism, drug use, missed work, and early death. In one study, individuals with six or more adverse childhood experiences died approximately 20 years earlier than their age-matched peers who did not have such experiences.[25]
When a concern exists that child abuse or neglect is creating a toxic environment, what is the medical provider's responsibility?
Image courtesy of Wikipedia | Centers for Disease Control and Prevention.
Answer: B. Report – Notify the local Child Protective Services agency of concerns about child maltreatment in the home.
When a mandated reporter has a reason to believe that child abuse or neglect of any type has occurred, he or she is required to notify Child Protection Services. This is not considered a breach of patient confidentiality, and good-faith reporters are granted immunity from criminal and civil liability. In the state of Texas, for example, a mandated reporter is defined as "an individual who is licensed or certified by the state or who is an employee of a facility licensed, certified, or operated by the state and who, in the normal course of official duties or duties for which a license or certification is required, has direct contact with children. The term includes teachers, nurses, doctors … employees of a clinic or health care facility that provides reproductive services...." (TFC Sec. 261.101) It is important to be aware that providers are not required to be 100% certain that maltreatment has occurred before reporting; they are required only to have a reasonable suspicion that abuse has occurred.[10]
Image courtesy of US Department of Health and Human Services Administration for Children and Families Administration on Children, Youth and Families Children's Bureau.
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