The fine line between childhood illnesses and Munchausen syndrome by proxy

“Fine lines” in medicine often refer to situations where decisions are not clear-cut and require careful judgment. Perhaps the most tenuous of lines is the one between “real” childhood illnesses and those caused by Munchausen syndrome by proxy.

Munchausen syndrome by proxy (MSBP), also known as factitious disorder imposed on another (FDIA), refers to a specific form of child abuse in which a caregiver, typically a parent or guardian, fabricates, exaggerates, or induces physical or psychological illness in a child. The caregiver may seek unnecessary medical attention for the child, leading to unnecessary and potentially harmful medical interventions. Although the disorder has been described mainly between mothers and daughters, it has also been observed between caregivers unrelated to their patients, as well as in other pairs.

Technically there is a difference between medical child abuse and MSBP, although the terms tend to be used synonymously. The key difference lies in the motivation of the caregiver: in MSBP, the caregiver’s actions are driven by a psychological need for attention or sympathy, as in classic Munchausen’s syndrome, whereas in other forms of medical child abuse, the motivations can vary. So, while all cases of MSBP are considered medical child abuse, not all cases of medical child abuse are MSBP.

There are several clues to diagnosing MSBP. Perplexed pediatric hospital teams are often the first to become suspicious about the etiology of the symptoms. The possibility of MSBP can lead to an investigation by the authorities: law enforcement and child protective services (CPS) agencies. As mandated reporters, hospital personnel are bound by law to report possible child abuse, and they are afforded considerable latitude even if they get it wrong, as long as the report is made in good faith.

In light of the horrible crime of child abuse, there must be tolerance for error in reporting it. Otherwise, families could retaliate in bad faith against health care providers, which could have a chilling effect on reporting. The difficult question is: How much error is permissible? How much leeway do we give providers before we accuse them of reporting in bad faith?

The answer is: It depends, and the margin is determined on a case-by-case basis – now that the jury has ruled in the case of Maya Kowalski. Hers is famous for the repercussions of reporting an incorrect diagnosis of MSBP, as featured in the Netflix documentary Take Care of Maya.

Maya’s case made national headlines in 2016 because her doctors were skeptical of her diagnosis of complex regional pain syndrome (CRPS) and, instead, called the state abuse hotline to report Maya’s mother, Beata Kowalski, for suspected child abuse. Following a child protection investigation, Maya, then ten years old, was removed from her family and sheltered at St. Petersburg-based Johns Hopkins All Children’s Hospital. Beata died by suicide – she hung herself in the family garage – after being separated from Maya for 87 days.

Accusations of MSBP were never proved, and the Kowalski family sued the hospital in 2018 for false imprisonment, negligent infliction of emotional distress, medical negligence, battery, and other claims. The case took years to reach trial and lasted two months, ending recently. Maya, now 17, and her father and brother were awarded more than $260 million in compensatory and punitive damages. The three broke down crying as the jury read the verdict.

Maya’s case may be settled for now, but the story doesn’t end in the courtroom. It leaves us with several uneasy questions. For example, Sally Smith, MD, is a pediatrician and the former medical director of the child protection team who was called to investigate the child abuse allegations against Beata. Smith was vilified in the Netflix movie, and she has been accused of too hastily diagnosing cases of suspected child abuse, “ripping apart families.”

It was also alleged in the documentary that Smith was not forthcoming about her role and identity in the investigation and that she worked for a third party that stood to gain financially from treating medically abused children (Smith and her employer settled with the family last year). Should we consider Smith the real Munchausen, inflicting harm upon the entire Kowalski family and others?

I wonder whether the outcome for the Kowalski family would have been different had the medical team decided that Beata was overzealous about Maya’s treatment – for example, demanding ketamine for pain – and that her actions were misguided yet not fabricated and deceptive, as required for a diagnosis of FDIA according to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR). The distinction between the unintended medical sequelae of helpful treatments demanded by an overbearing mother and a mother with MSBP who intentionally causes harm to her child is real and has far-reaching implications.

Did the medical team take into account that Beata was a registered nurse and that her advocacy for Maya, which the team interpreted as aggressive, was what any aggrieved mother might do, especially one raised in Poland, where cultural communication tends to be blunt and direct? What about Beata’s psychological testing, which showed no evidence of psychopathology other than an “adjustment disorder,” as would be expected in someone under duress. If hospital personnel doubted Beata’s account that Maya had CRPS, why did they bill for services under that diagnosis?

Also, what about parents’ rights to decide the best treatment for their children? This issue is raging not only in the care of very sick children but also children and adolescents diagnosed with gender dysphoria seeking gender transition therapy. Who decides whether treatment can proceed – the state, by virtue of increasingly restrictive laws, or the patient and their family along with the doctor?

What is the correct course of action in cases of MSBP? Remove the child and traumatize a potentially innocent family, or do nothing and potentially let a child die? Those of us in the helping professions (medical, social work, CPS agencies) must do our absolute best with the tools and resources we have. Maya Kowalski’s case reminds us that there is really no margin for error in diagnosing medical child abuse. The consequences of a misdiagnosis for both the child and the family are too steep. It cost Beata Kowalski her life.

Arthur Lazarus is a former Doximity Fellow, a member of the editorial board of the American Association for Physician Leadership, and an adjunct professor of psychiatry at the Lewis Katz School of Medicine at Temple University in Philadelphia, PA. He is the author of Every Story Counts: Exploring Contemporary Practice Through Narrative Medicine.

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