It was November 2014. I was leaving the parking structure of my local children’s hospital when I realized, “They don’t believe us.”

I didn’t know it at the time, but it would take seven more months to find the cause of my eight-year-old daughter’s unremitting abdominal pain. An ultrasound ultimately revealed a malignant mass on the adrenal gland. Ultrasound is a rudimentary imaging technique, so why did it take so long to get to something so basic for a sick child?

The medical professional who should have organized the investigation refused to. Our pediatrician executed what I call functional abandonment. A month into the illness, he was direct in saying that he didn’t believe he could help.

The emergency department (ED) physicians were also of no assistance, assuring me nothing was wrong and even going so far as to discourage me from keeping a scheduled appointment with a gastroenterologist the following week. A repeat visit was not enough to inspire the use of any of the diagnostic imaging tools they had on-premises.

I was left to manage the work-up of my daughter’s illness on my own.

The slippery slope to abuse allegations

After living in the pediatric cancer world for the past nine years, I’ve come to understand that our experience is not unique. I received a sharp reminder of this when I recently (unintentionally) witnessed, despite the privacy curtain in my daughter’s shared hospital room, a mother being told for the first time that her child had cancer.

Her reaction was not what people might expect, yet I understood it. At that moment, she wasn’t a mother in distress; she was a mother who was relieved to have an answer. Like me, she had taken her daughter to countless providers, only to be told nothing was wrong.

The delay in diagnosis for this mother’s daughter—and my daughter—resulted more from a refusal to investigate than a medical mystery. And in my case, I suspected bias.

Medical records from our first and second ED visits, where I had my most uncomfortable physician interactions, confirmed my suspicions. They included a differential diagnosis that listed malingering and Munchausen syndrome as well as the statement, “Suspect all issues are behavioral.”

Following my daughter’s cancer diagnosis, I expressed my concerns over these records to the ED director at our children’s hospital, the same hospital now managing her oncology care. Not only did I share my displeasure with the judgments made, but I also pointed out how these notes could transfer bias to physicians downstream, an especially likely outcome in the setting of a major, regional children’s hospital where outpatient specialist clinics have a shared electronic medical record with the hospital.

I am not sure if the Munchausen syndrome reference in our ED records was centered on me or my daughter, but in the pediatric setting, there is more concern about a parent being deceptive or nefarious than a child due to the abusive nature of the former.

Munchausen syndrome by proxy is a real phenomenon that has captured public fascination. There are true crime accounts, such as the story of Gypsy Rose Blanchard, as well as fictional series, such as Sharp Objects. But what the public may not know is that the nebulous way in which this kind of abuse is defined could leave any parent at risk of being accused, especially a parent searching exhaustively for a diagnosis.

One pediatric book in particular has shaped current thinking on this issue. Medical Child Abuse: Beyond Munchausen Syndrome by Proxy, authored by Dr. Carole Jenny, a pioneer and person of influence in the subspecialty of pediatric child abuse, and Dr. Thomas Roesler, was first released in 2009. The American Academy of Pediatrics (AAP) published the book, which gave it additional credibility and visibility.

This book was authoritative and innovative in asserting that the term Munchausen syndrome by proxy should be retired in favor of the term medical child abuse. Where the book went beyond innovation—arguably becoming problematic—was in its definition of medical child abuse. Instead of limiting the definition of abuse to the more concrete and harmful, such as poisoning or outright lying to obtain invasive procedures, it was broadened. Physicians were encouraged to consider if the parent was engaging in the medically unnecessary.

What constitutes medically unnecessary is debatable, and the application of the concept could easily ensnare a diligent parent seeking a diagnosis for their child. Examples of the medically unnecessary include seeing many different physicians, firing a physician, requesting additional tests, or not accepting a diagnosis. All of these applied to me in our search for a diagnosis. Given the ubiquity of diagnostic problems, especially connected to rare pediatric illnesses such as immune deficiency disorders, mitochondrial disease, and chronic pain disorders, the inclusion of medically unnecessary in the definition is dangerous and also at odds with the ethics of medicine due to the profiling and bias it encourages.

Munchausen syndrome by proxy is considered rare. Before its name was changed and its concept broadened, its incidence was thought to be 2/100,000. Therefore, the axiom taught to physicians about diagnosis, “When you hear hoofbeats, think horses, not zebras,” should hold. If physicians are to first consider the more common causes of illness, why are they quick to suspect medical child abuse?

The legal landscape of medical child abuse

While I write from a parent’s perspective, this experience crosses into my professional interests; I have worked in medical professional liability claims for 16 years. I am very interested in situations where patients did not receive good care or where medicine struggled to help. As you might expect, I am keenly interested in health care law and legal trends regarding lawsuits against hospitals and physicians.

Historically, hospitals and physicians have been protected from lawsuits stemming from false abuse allegations due to statutory immunities for mandatory reporters. This lack of accountability has arguably led to over-reporting of medical child abuse, with medical professionals believing that once a report is made, the outcome of the state’s subsequent actions is not their responsibility.

However, I would caution physicians that it is naïve to think that immunity always applies. Immunity depends on the unique circumstances of the event, which will impact the allegations.

An example of a case where immunity may not apply is Meyer et al. vs San Diego County et al. The lawsuit alleges illegal video surveillance of an inpatient child and her parents due to a suspicion of medical child abuse. In this case, the surveillance went far beyond what is considered a typical timeframe, with the patient and parents (who were found to be innocent of wrongdoing) being monitored continuously for about a month. This case is still being litigated, and it illustrates how tactics employed in investigating medical child abuse are of separate legal issue from false or irresponsible reporting.

Kowalski et al. v. Johns Hopkins All Children’s Hospital, Inc., et al. also find latitude within statutory immunities for mandatory reporters. Venued in Florida, this case resulted in a $261 million plaintiff verdict in late 2023. The events that led to this litigation, which are chronicled in the Netflix documentary Take Care of Maya, involve a child who was suspected of being a victim of medical child abuse by her mother. A report was made, and the state separated the child from her family, with the hospital becoming the physical custodian. Two months into the mandated separation, the child’s mother committed suicide. Her note was explicit; she was distressed at not being able to see her daughter. This lawsuit is unique in that the hospital was found liable for the mother’s wrongful death.

Parental freedom in raising and nurturing children is a protected right under the U.S. Constitution. A plethora of legal decisions dating back decades uphold this fundamental right across many contexts. A 1979 U.S. Supreme Court ruling in Parham v. J.R. affirmed parental freedom applies to medical decision-making, concluding that parents are presumed to act in the best interest of their children in medical care, and this should not be overridden by the State.

Many hospitals have posted on their premises what is known as the Patient Bill of Rights. This was first conceptualized by the American Hospital Association but was later refined by a committee organized during the Clinton Administration. The Patient Bill of Rights itemizes principles with a legal basis, such as the right to privacy, decency, or to be treated with respect. Despite the Patient Bill of Rights affirming the right of patients to make decisions in their own care, the medical child abuse definition targets parents for taking on this responsibility on behalf of their child.

The definition of medical child abuse is too broad.

There is a principle in medicine that damage can be done by attempting to screen for every occurrence of disease. The ideal screen will catch the majority, but the idealism of catching every case will likely come with unacceptable consequences. For example, a too-sensitive screen may lead to false diagnoses and unnecessary invasive procedures.

This is what we’re seeing play out with today’s overly broad definition of medical child abuse. The medically unnecessary criterion of the definition has led to damaging practices that violate ethics, decency, and law and erode public trust.

Dysfunction is clearly present when MitoAction, a non-profit created to assist people with mitochondrial disease, feels the need to operate a support line and resource page for parents accused of medical child abuse. Dysfunction was clearly present nine years ago when Munchausen syndrome was so quickly and carelessly bandied about on my daughter’s ER records.

An updated definition would bring a higher quality of care

When the AAP approved the inclusion of medically unnecessary in the definition of medical child abuse, did it consider the consequences of casting such a wide net?

The damage extends beyond the injustice of innocent parents falsely reported. The mere threat of reporting has a chilling effect on parents’ efforts to advocate for their children. It also chills physicians’ efforts to investigate, as they’ve been trained to be suspicious of parents in difficult-to-diagnose cases.

Since the AAP published a problematic definition—and medical child abuse is exclusive to pediatrics—the onus is on the AAP and pediatricians to put forth an update that will improve the partnership between parents and physicians. The Jenny/Roesler book was first published 15 years ago, which is a long time in the medical world. It doesn’t appear that revised editions were produced, and it is now out of print.

The practice of medicine demands that practitioners learn from mistakes and consider new information, leading to progressive updates to the standard of care and surrounding law. It’s past time that learned lessons be applied to the medical child abuse definition.

Luck shouldn’t find cancer.

How did we receive the needed study that found an adrenal mass in my daughter? Mostly, we got lucky.

Six months in and many specialists later, I realized that my daughter’s mysterious illness was most likely to be solved at the pediatrician level. However, I was worried that seeking a new pediatrician would further align me with the medical child abuse profile. Fortunately, the parent of my child’s castmate in a school musical was a pediatrician. At our very first appointment, she ordered an ultrasound.

I don’t know what happened to the mother and daughter on the other side of the privacy curtain, but I do know this—it shouldn’t have been so hard to find a tumor, in their case or ours.

Holly Cantley is a patient advocate.