Overview: What every practitioner needs to know

Medical child abuse (MCA) is defined as a child receiving unnecessary and harmful or potentially harmful medical care at the instigation of a caretaker. Previous names for this type of child maltreatment include Munchausen syndrome by proxy, factitious disorder by proxy, pediatric condition falsification, and fabricated or induced illness by a carer.

In this form of child abuse a caretaker, most commonly a mother, engages in a pattern of behavior that results in medical care providers giving care that the child does not need and which is or could be harmful. As an example, if a mother is caught smothering her child with a pillow and he dies, the event is called fatal physical abuse of a child (or homicide). If she smothers her child until he turns blue and then takes him to the doctor for care without revealing her involvement and he receives a bronchoscopy, the potentially harmful procedure represents medical abuse. Likewise, if a mother does not smother her baby but lies to the doctor saying the child turned blue, and the baby gets an unnecessary bronchoscopy, the procedure is again an example of medical child abuse.

Are you sure your patient has medical child abuse? What are the typical finndings for this disease?

Identifying Medical Child Abuse

As with other forms of child maltreatment, identification of MCA begins with having an index of suspicion that it might be taking place. Having MCA on the list of potential causes of the child’s condition, the differential diagnosis, even if well down the list of potential explanations, insures that medical providers remain conscious of the possibility that medical care might not be necessary. Another way of making this point involves the physician being constantly on the alert, even if only at a minimal level of alertness, that the doctor/ patient relationship might be jeopardized.

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The diagnosis, as with most forms of child abuse, is made primarily after conducting a thorough history and physical. Finding a discrepancy between physical and laboratory findings and the stated history can result in the physician looking beyond the obvious explanation and considering more uncommon causes, including the possibility of an inaccurate history.

If the parent gives the history that the infant rolled off the bed, and the child has retinal hemorrhages and subdural hematomas, one might be wise to question the history. The evidence might more accurately suggest the child was violently shaken. Likewise, if the history is that the child has been vomiting constantly for 2 days, and the physical exam documents a happy baby with no clinical or laboratory signs of dehydration, one might question the history. The parent might well be giving an exaggerated or totally fabricated story. The first example represents physical abuse while the second is an example of MCA.

Most parents want only necessary medical treatment for their child and follow the rules of the doctor/patient relationship. The admonition taught every pediatrician to “Listen to the mother!” is right most of the time. But occasionally listening to the mother will result in harm to the child. Knowing when to listen and when to doubt is the challenge.

Identifying MCA varies depending on the nature of the treatment relationship. A primary care pediatrician might suspect he or she is receiving inaccurate information at the first visit or well along in the treatment of a child. It might actually be more difficult to listen to the note of caution lurking in the back of one’s consciousness later in the treatment relationship; to stop trusting a parent considered trustworthy for a number of years.

A suspicion of MCA is only that. Confirmation comes when the doctor informs the mother the child does not need the treatment the mother is requesting or the treatment previously given and signals a significant decrease in the need for treatment. If the mother responds positively, accepting the improved assessment of the health of her child, then treatment can proceed on the new terms. If there is strenuous objection, or precipitous move to seek another physician who will give the unnecessary treatment, this constitutes evidence that the child might need protection from the actions of the parent.

A specialist asked to consult regarding a puzzling set of symptoms has the opportunity to look at the situation with new eyes. The gastroenterologist, for example, can look at the lack of dehydration in a child purportedly vomiting nonstop for 2 days, and say, “I don’t believe it. Instead of performing an endoscopy on this child, let’s observe her in the hospital for a day or two.” This perspective is possible because it is consistent with the role of the outside expert offering a new opinion of the child’s condition. Once again, observing the parent’s reaction is the key to whether the child might be in danger of too much medical care.

A child abuse specialist will typically be consulted when the primary treatment team is unable to make a clear determination that care needs to change, or in complicated situations involving multiple treatments prescribed by numerous physicians over long periods of time. The childabuse pediatrician will likely be tasked with reviewing many years’medical records looking for patterns of parent behavior resulting in unnecessary and harmful treatment. The report generated by this medical record review becomes the primary document to help the treatment team reassess its treatment strategy and to inform social service agencies and the courts that the child might need protection.

Ways a parent can instigate excessive medical care

A parent can induce excessive medical care in several different ways. She may be predisposed to being anxious and make frequent requests of the physician to “please do one more test to make sure.” While excessive care by physicians can sometimes be attributed to concerns about possible claims of malpractice (defensive medicine), a decision to provide a diagnostic test “to put the parent at ease” can happen just as easily. One such test or medication trial or procedure may not constitute MCA but a pattern of continued behavior that “crosses the threshold” could result in a need for protection.

Aparent can exaggerate an existing symptom. If a child has a temperature of 102 F and experiences a brief febrile seizure the parent can exaggerate and say the thermometer read 105 and the seizure went on for 30 minutes. A physician getting this history might feel compelled to do a much more extensive workup.

A parent can fabricate symptoms. She could tell the physician her child had three seizures when in fact he had none. Even if the EEG did not capture seizure activity this child might end up on a protracted course of anti-seizure medication based on the false report.

A caretaker could induce a symptom and then lie about how it happened. She could put a pillow over her child’s face causing an hypoxic seizure and then tell the doctor she witnessed a spontaneous seizure event. Any medical care given based on this information would be unnecessary and potentially harmful.

In fact, parents have exaggerated and fabricated all manner of symptoms and induced a multiplicity of medical conditions. Examples include exaggerating gastrointestinal complaints resulting in surgery such as fundoplication and even bowel transplant, causing a child to have life threatening anemia by removing blood from a central line, inducing polymicrobialsepsis by contaminating a central line with saliva or feces, or causing repeated vomiting by illicit ipecac administration.

The many names for medical child abuse

The form of child maltreatment we have come to call MCA was originally described by Meadow in 1977. He wrote a paper early in the history of medical awareness of child abuse describing two cases. One was a parent who induced hypernatremia in her infant who eventually died. The other described a mother who fabricated symptoms of hematuria by putting her menstrual blood in samples of the child’s urine. He coined the term Munchausen syndrome by proxy (MSBP) although he later wrote about regretting having used the name.

When the committee writing DSM IV was asked to consider MSBP as a diagnosis it decided enough evidence did not exist to include it in the list of recognized psychiatric diagnoses. It did confer a designation of“Factitious disorder by proxy” and gave “research criteria” that people could use to develop evidence for inclusion in the future. However, these criteria applied to the adult perpetrator instead of the child victim as conceived by Meadow.

The American Professional Society on the Abuse of Children (APSAC) convened a task force to try to reach consensus on what to call this type of abuse. Should it be a diagnosis of the child or the adult? Was it a psychiatric diagnosis or a pediatric diagnosis? They concluded several years of discussion by designating two terms. The adult would continue to be described as having a psychiatric diagnosis named factitious disorder byproxy. The child, maintaining the emphasis on the parent’s intent to deceive, would be designated as suffering from “pediatric condition falsification.”

In Great Britain use of the term MSBP came to be increasingly problematic. The lack of specificity, and focus on the prevarication, was making prosecution of individuals and protection of children difficult. The task force convened in that country decided on the term, “Fabricated or induced illness in a child by a carer.”

The Baron von Munchausen was a real person who came to be caricatured in a series of children’s stories as an individual who made up fantastic tales much in the mode of Paul Bunyan in the U.S. Hence the original description of this type of abuse focused on the lying or deception on the part of the parent. We have since come to understand that lying about child abuse does not distinguish this form from others as it occurs universally.

Another early author thought the abuse should be named Polle syndrome after a son of Munchausen who died under suspicious circumstances. Meadow traveled to Munchausen’s birth place in Germany and found that Polle was not the name of a child of the Baron. There was a child possibly fathered by the Baron late in life with a 17-year-old woman. This child died in infancy of disease (common in the 18th century). The infant was named Maria. Her mother came from a town named Polle.

Why has it taken so long to just call it abuse?

Physicians asked to identify medical child abuse must somehow come to the realization that medical treatment meant to be health generating was given inappropriately and may be potentially dangerous to the child victim. Normal emotional responses to discovering that one’s well intended medical care has been perverted into potential or real harm include feeling guilty, sad, betrayed and angry.

In the initial stages in the discovery process a physician is likely to be concerned about how he or she came to be deceived. While this is important information it might tend to get in the way of considering what has happened to the child and what should be done to make sure it does not happen again.

Descriptions of MCA that focus on the parent lying offer physicians a somewhat comfortable explanation to the question, “How did I get into this situation?” They can fall back on the evidence that they were given false information. While this is true, and the abuse could not have taken place without false information, it is important to move on the more important questions, such as “What harm has been done? And how can we prevent furtherharm?”

How important is the motivation of the perpetrator?

Early descriptions of this form of child abuse posited that it was defined by a particular motivation of the parent. Namely, it was said that a mother would expose her child to unnecessary medical care to meet her own needs for nurturance from the medical care environment. This is equivalent to saying that physical abuse is only present in an environment where a parent has anger management issues, or that sexual abuse is only found when the perpetrator has abnormal sexual attraction to little children. While this may be the case in many situations, there is no requirement to know the adult’s motivation to determine if abuse has taken place. Abuse is defined by the experience of the child, not the experience of the adult.

It is just as important to know the motivation of the perpetrator of MCA as it is for other forms of child maltreatment. It is not necessary to know the motivation to determine if abuse has taken place. However, it is extremely important if there is a consideration of placing the child back in the environment inhabited by the perpetrator. One would want to know what was going on in the mind of the adult who caused harm to the child before returning the child to that adult.

What other disease/condition shares some of these symptoms?

Similarities and differences between medical abuse and physical, sexual or psychological abuse

All these forms of child maltreatment present in many different ways. Physical abuse can result from a burn, a beating or forcing a child to stand in a corner for an extended period of time. Medical abuse has been associated with a myriad of falsely reported symptoms and unnecessary treatments.

In all form of abuse the behavior falls on a continuum from mild to severe. Mild forms are usually common while more severe presentations are unusual. Many children receive corporal punishment in this country but only a small percentage of these children experience serious injury as a result. Similarly, parents frequently exaggerate claims of symptoms to their children’s doctor, but only occasionally do the distortions reach the level that a child might need protection.

On the severity continuum for all forms of abuse there is a societally determined threshold that constitutes the point where the community steps in to protect the child. The threshold varies from culture to culture and changes over time. Corporal punishment of a child is illegal in much of Europe today but remains legal in the U.S. if not accompanied by physical damage. And what represents abusive treatment in the current U.S. culture was considered normal child rearing a century ago.

As with other forms of child abuse, MCA is not a distinct illness. It is an event in the life of a child; much the way being involved in a motor vehicle accident is an experience that has variable consequences. It is not an illness but can result in an illness. A child who receives an unnecessary pancreatectomy because of actions of his or her caretaker can experience a lifetime of compromise.

Physicians are often called on to identify or evaluate abuse in its various forms but the determination of what ultimately constitutes abuse is a function of the society at large as delegated to social service agencies and the courts. As physicians we may come to appreciate that our medical care is inappropriate and we can act to discontinue the care, but the determination of whether the child needs ongoing protection is made by the legal system.

The only significant differences between MCA and other forms of abuse is the involvement of the medical community in delivering potentially harmful care. Medical care providers are the instrument of the harm – we are the “stick” the caretaker uses to inflict harm to the child.

What caused this disease to develop at this time?

The cause of medical child abuse

As hard as it may be to comprehend, child maltreatment has been a part of every human society. The most severe form of child maltreatment, infanticide, or the murder of an infant, continues to exist in modern American culture and may be much more prevalent in other parts of the world as a way to control family size and the gender of children. After having said that the “causes” of child maltreatment must certainly be many and diverse, we can comment on the immediate environment in which medical child abuse takes place.

Medical abuse represents a breakdown of the doctor/patient relationship. The medical contract includes a provider who promises to give appropriate care to restore the patient to health and a patient who promises to cooperate with treatment including giving an accurate history of the onset and course of symptoms. The importance of accurate information is underscored by the physician’s promise of confidentiality. “Tell me the truth and I promise not to tell anyone.”

Among the mostly unstated rules governing the delivery of medical care is the assumption that by declaring one’s child ill, the parent and the child are entitled to special treatment. The child does not need to go to school. A parent can stay home to take care of a sick child. Other responsibilities are postponed. Time is allowed to help the child return to his or her previous state of good health. At that time the child and family are expected to resume normal responsibilities in the community. In exchange for this special treatment, the parent is expected to help in the treatment by giving accurate information and following the recommended treatment regimen.

If the parent of a child provides false information and the child is exposed to harm, the caretaker is disregarding the rules. The doctor/patient relationship has been violated with the child being the person who suffers. It goes without saying that medical personnel have a responsibility to monitor the doctor/patient relationship to assure that both parties are acting in good faith. But if a pattern of parental behavior persists resulting in a child being harmed, then the community as a whole must consider if the child requires protection just as it would from physical, sexual or emotional maltreatment. As with physical or sexual abuse, intervention by social services leads to a waiver of the confidentiality rules.

Medical abuse or malpractice?

Medical abuse is not malpractice. Malpractice is medical care initiated by a physician that results in harm to a patient. The generally accepted measure of what constitutes malpractice is care that causes harm and does not meet the standard of other physicians practicing in the community. In medical child abuse most physicians would offer the same care based on the information available. For example, if a parent gave a convincing account of a child experiencing multiple seizures, even if they never occurred, a conscientious physician would investigate carefully and perhaps even start an anti-seizure medication that could be potentially harmful.

Medical abuse is a caretaker getting too much medical care for a child just as medical neglect represents a parent getting too little medical care. In neither case is the primary responsibility borne by the physician.

If you are able to confirm that the patient has medical child abuse, what treatment should be initiated?

Treatment of the victim of medical child abuse

Treatment of MCA follows the same steps as used in the treatment ofchild maltreatment in general. Those steps involve: 1. Identifying the abuse; 2. Stopping it; 3. Ensuring the abuse cannot re-occur; 4.Correcting the medical and psychological consequences of the abuse; and,5. Doing all this while maintaining the integrity of the family as much as possible.

We have already discussed identifying the abuse. As with other forms of child maltreatment, the abuse can be discovered almost immediately or persist for months or years. In any case, treatment cannot begin until it is identified.

Stopping MCA involves ending the harmful medical care and instituting a new treatment plan. As suggested earlier this may take place smoothly in situations at the mild end of the continuum, or may result in a need to muster a significant community response to protect the child. In contrast with other forms of child abuse, the medical care providers need to make a conscious effort to stop what they are doing and institute proper evidence based care. They need to make a medical judgment that involves undoing what they thought previously and starting anew. And, most significantly, as medicine is frequently practiced in teams, the whole team must communicate and agree to the new direction.

This last point is one of the most difficult obstacles to the treatment of MCA. Physicians who previously thought one way about a child’s treatment must make an about face and consider the problem with a whole new set of data. Coming to the new realization requires a fair amount of flexibility by everyone on the team. The best means of achieving this new realization is to sit down together and talk the situation through from beginning to end in a multidisciplinary format.

The informing session has been identified as a significant event in the treatment of MCA. Once the treatment team is in agreement about the need to change the care being delivered, it needs to communicate this to the family. The designated person “informs” the mother and other family members of the “good news,” that the child is not nearly as ill as previously thought and that it is necessary to change the treatment plan appropriately. Notice that this step is doomed to failure if the treatment team is not in complete agreement. Otherwise the parent will find the person who continues to say what she wants to hear. The response to the informing session by the caretaker who has elicited the harmful medical care can be anything from relief to disbelief to anger. One must be prepared for the entire range of responses.

There is a mandatory reporting law concerning suspected child abuse in all jurisdictions in the U.S. The response to the informing session is often the trigger for reporting the need for the community to consider measures to keep the child safe. A parent who responds to hearing that her child is essentially healthy with threats to fire her physicians and find ones who will continue the treatment is demonstrating that her child is in ongoing danger. A report to the appropriate child protection agency is not only indicated but mandated by law.

In order to provide for ongoing safety, child protection agencies will typically work with the medical caregivers to put in place supervised visitation, no contact orders, or other steps to keep the child from be being re-exposed to an unsafe environment. Rarely, in cases where the life of the child is in danger, the court system may initiate termination of parental rights.There have been situations where the parent’s behavior was so egregious that criminal proceedings have resulted in incarceration.

Treatment necessarily includes undoing any harm that may have resulted from unnecessary medical care. If the child received an unneeded colostomy, surgery is indicated to reverse the situation. In general, the rule is to stop and reverse the most dangerous unnecessary medical treatment first. Unneeded central line access carries with it significant risk and should be discontinued as quickly as possible. Similarly, medications with serious long term side effects need to be stopped.

The psychological effects of MCA have not been studied in detail. The few studies available indicate that psychological effects mirror those seen in other forms of abuse. Adults previously abused in this manner have been shown to have difficulties in developing trusting relationships, to have increased rates of depression and anxiety, and, not surprisingly, confusion about seeking appropriate medical care.

The last step in the treatment of child abuse, maintaining the integrity of the family, involves finding a balance between the safety of the child and the desire to keep a primary child rearing environment intact. This balancing act is performed by social service agencies charged with making the difficult determinations. Physicians will be asked to assess how seriously the child might be harmed if exposed to continued abuse in the previously constituted family.

What causes this disease and how frequent is it?

Perpetrators of medical child abuse

Perpetrators of MCA have much in common with perpetrators of other forms of abuse. Almost all parents who mistreat their children lie about it. People who sexually abuse children almost never admit what they did unless confronted with overwhelming evidence. Admission of responsibility is the exception rather than the rule.

Perpetrators of child maltreatment seldom come forward and ask for help. Typically, another family member, or a member of the community raises the concern about a child’s safety.

Many perpetrators of child abuse experienced abusive behavior in their families of origin.

They have many different motivations. If one asks a father why he beat his child he might say he was applying discipline, or that he was intoxicated, or that he just lost his temper. A parent who gets excessive medical care for her child will say she only was following doctor’s orders, or that she thought being a good parent involved getting the best (or most) medical care for her child, or that she was afraid the child might die if she didn’t make the story sound convincing.

There are some differences. Parents who commit MCA tend to be female, while people who sexually abuse children are almost exclusively male. While perpetrators of MCA experienced various types of abuse as children, they appear to have been raised more frequently in households where medical symptoms were prevalent.

The frequency of medical child abuse

It is difficult to say how prevalent MCA might be. As noted, abuse presents on a continuum from mild to severe with the threshold indicating a need for protection being determined by individuals delegated to represent society as a whole.

Anxious parents who worry excessively about the health of their children are quite common. Every physician caring for children can readily identify a subgroup of parents who seek care for their children at a rate significantly greater than normal. Because physicians appreciate the excessive concern and make allowances for it, most of these children do not receive unnecessary medical care. Others do get medications they may not need but the extent of potential harm would not trigger significant concern for the child.

Currently awareness of MCA is only sporadically present in the medical care community. We recognize the potential of this abuse much as we did physical or sexual abuse 30 years ago. While the extreme cases may be identified more frequently than in the past (for example, the cases of polymicrobialsepsis induced by a caretaker), appreciation of the prevalence of MCA and a clear sense of what the threshold should be, awaits further experience by the medical and child protection communities.

How can medical child abuse be prevented?

Treatment of the perpetrators of Medical Child Abuse

Perpetrators of MCA include individuals at the mild end of the spectrum who are guilty of repeated acts of bad judgment and, at the severe end of the continuum, of behavior that can only be described as torture (for example, repeatedly putting feces in a central line knowing that life-threatening sepsis will result). Treatment should be directed in a case-by-case basis according to the behavior that put the child at risk.

In MCA, as with other forms of child maltreatment, treatment can only proceed when the individual who exposed the child to harm takes responsibility for his or her actions. A mother who admits her anxiety affected her judgment and asks for help to insure the behavior does not happen again can reasonably be treated with medication and psychotherapy. A person who denies she ever did anything wrong despite overwhelming evidence to the contrary is unlikely to benefit from therapy. In this circumstance the treatment is keeping the child safe from the parent who would be expected to continue with behavior she considers acceptable.

What is the evidence?

Bools, C. “Fabricated or Induced Illness in a Child by a Carer: a reader”. 2007. (This book, with contributions by most of the knowledgeable British physicians interested in MCA, is designed to help the reader evaluate cases and begin treatment.)

Boros, SJ, Ophoven, JP, Andersen, R, Brubaker, LC. “Munchausen syndrome by proxy: a profile for medical child abuse”. Aust Fam Physician.. vol. 24. 1995. pp. 768-769. (Boros and colleagues lay out the case for abandoning “Munchausen Syndrome by Proxy”.)

Bryk, M, Siegel, PT. “My mother caused my illness: the story of a survivor of Munchausen by proxy syndrome”. Pediatrics.. vol. 100. 1997. pp. 1-7. (A riveting first person account by a nurse of her childhood experience as a victim of MCA.)

Donald, T, Jureidini, J. “Munchausen syndrome by proxy. Child abuse in the medical system”. Arch Pediatr Adolesc Med.. vol. 150. 1996. pp. 753-758. (The Australian authors challenged conventional wisdom about the need to know the mother’s motivation.)

Meadow, R. “Munchausen syndrome by proxy. The hinterland of child abuse”. Lancet. vol. 2. 1977. pp. 343-345. (This is the classic first paper describing “Munchausen syndrome by proxy.”)

Rosenberg, DA. “Web of deceit: a literature review of Munchausen syndrome by proxy”. Child Abuse Negl.. vol. 11. 1987. pp. 547-563. (The seminal collection of case reports and first attempt to describe a syndrome.)

Roesler, TA, Jenny, C. “Medical Child Abuse: Beyond Munchausen Syndrome by Proxy”. (A detailed and comprehensive description of the MCA concept and an account of treatment using many case examples.)

Southall, DP, Plunkett, MC, Banks, MW, Falkov, AF, Samuels, MP. “Covert video recordings of life-threatening child abuse: lessons for child protection”. Pediatrics.. vol. 100. 1997. pp. 735-760. (These authors document scores of parents caught smothering their children in the hospital.)