Julio César Velásquez Mejía/Pixabay
Haley Kerr ’24 is a neuroscience major with a biology minor and a 2023-24 health care ethics intern with the Markkula Center for Applied Ethics at Santa Clara University. Views are her own.
The alarming possibility of unrecognized child abuse has led the United States to overcompensate and create a new alarming possibility: the misdiagnosis of child abuse. In 2009, in response to a growing recognition of hidden child abuse and neglect, the American Board of Pediatrics recognized Child Abuse Pediatrics as a distinct pediatric subspecialty. These pediatricians would practice a combination of medicine and forensics to diagnose a child’s condition and its cause through the analysis of medical imaging. According to the journal Pediatrics, as of June 2023, there were 425 certified Child Abuse Pediatricians (CAPs) in the United States. The job of a CAP is necessary for recognizing abuse in children. However, their unchecked power has resulted in a vast amount of trauma and pain to families affected by misdiagnosis, violating the physician’s oath to nonmaleficence.
The Case of Maya Kowalski
The danger of the misdiagnosis of child abuse became a hot topic of discussion at the end of 2023, when Netflix released a documentary about the unfinished case of Maya Kowalski. Maya Kowalski was 10 years old when she was admitted to the Johns Hopkins All Children’s Hospital with excruciating abdominal pain in 2016. Her parents explained to the hospital that Maya suffered from a neurological disorder called Complex Regional Pain Syndrome (CRPS). They insisted that the only way to help Maya tolerate the pain was administering an infusion of Ketamine. Although Ketamine is FDA approved for use as an anesthetic, it is more commonly known as a drug of abuse that has hallucinogenic properties. Since Ketamine overuse can cause a number of health problems, a nurse became concerned by the request and brought in Dr. Sally Smith, a CAP, to investigate the case. Despite an original case being dismissed due to a lack of evidence, Smith filed another report, claiming that Maya’s mother had Munchausen syndrome by proxy. This mental illness is characterized by the caretaker of a child falsifying symptoms or purposefully creating symptoms to make it appear that their child is sick. In Maya’s case, because the health care providers could not find an explanation for her pain, they assumed that Maya’s mother was making it up. The state took custody of Maya, holding her in the hospital and removing her parents’ ability to contact her. When the pain of not being able to speak to her daughter became too much, Maya’s mother took her own life.
What was not detailed in this case, was that Maya’s regular Ketamine infusions were under the direction of an anesthesiologist who studied CRPS. These treatments resulted in “huge progress” according to Maya’s father. To the Kowalskis, these infusions were not nearly as scary as watching their daughter suffer from pain that no other doctor had a cure for. Maya’s mother had also been evaluated by a licensed psychologist who found no evidence of Munchausen syndrome by proxy. Finally, in January 2017, Maya was taken to be evaluated by a professor who studied CRPS at Brown University. The professor agreed that she had CRPS and that the diagnosis of Munchausen by proxy was incorrect. Maya was returned to her father’s custody, but the trauma and devastation had already occurred and will be carried with them for the rest of their lives.
Unfortunately, Maya’s case is not uncommon. A yearlong investigation in 2018, performed by the Houston Chronicle and NBC News, found that “there were 3.5 million reports of suspected child abuse in America, and only 680,000 accounts were verified by authorities.” This huge disparity suggests that within child abuse cases, misdiagnosis may actually be quite common.
Risk Factors Affecting the Misdiagnosis of Child Abuse
The biggest issue with the diagnosis of child abuse in health care is that CAPs have immense power that goes relatively unchecked. Their decisions are often taken as fact, even if they are unsupported by other specialists’ opinions, and there is little secondary testing done to check these claims. This is problematic because CAPs are not infallible and can be guided by an entirely subjective “gut feeling.” They are also not experts in many of the rare conditions that can present similarly to abuse. In Maya Kowalski’s case, further testing done by a specialist from Brown University proved that her condition was real, but this testing was not allowed by the court until after Maya’s mother had passed and the family had experienced undue suffering.
Another major issue is that child abuse diagnoses disproportionately affect socioeconomically disadvantaged families. Although there is no racial or ethnic difference in the frequency of children being confirmed as abuse victims, those who come from a minority background are more likely to be reported. Specifically, research has shown that, “a child’s injuries are as much as nine times more likely to be reported as resulting from abuse when the child is black rather than white.” This is a gross violation of justice, because minority families are disproportionately involved in the child welfare system and physicians are potentially missing actual cases of abuse because a child is white.
Preventing the Misdiagnosis of Child Abuse
In order to reduce the number of misdiagnoses of child abuse, the examination process for each diagnosis must be entirely restructured. Each diagnosis should be reviewed by a multidisciplinary team that includes, but is not limited to:
- Pediatric subspecialists specializing in medical conditions that present similarly to child abuse
- Clinical psychologists to examine the patient and family
- CAPs who have the sole job of examining the injuries/symptoms and family explanations, and can therefore devote more time to the investigation
These teams should consider questions of the following nature during their investigations:
- Why do I suspect child abuse?
- Is there objective evidence of child abuse?
- Is a dissimilarity between the family’s appearance or values and mine affecting my thinking?
By having a diverse team examine each case, implicit biases are less likely to disproportionately influence the outcome. By implementing this system where each individual’s power is checked by the diversity of the group as a whole, misdiagnoses can be prevented from the outset of each investigation.
Additionally, these multidisciplinary teams need to have knowledge about prior cases they have worked on and be debriefed on any mistaken diagnoses. In doing so, if a case was misdiagnosed, the teams can learn from their mistakes and be reminded of the weight of the decisions they are making.
Finally, the main goal of these multidisciplinary teams should shift from diagnosing child abuse as soon as there is a sign, to ruling out other possibilities before making their final decision. Implementing these measures will not only prevent unjust trauma, but will also allow the multidisciplinary teams and other affected parties to improve the quality of their care in cases where child abuse is objectively apparent.
Moving Forward
As detailed by Maya Kowalski’s case, a misdiagnosis of child abuse has the potential to wreak havoc on individuals and their families. Innocent parents fighting against child abuse claims may be ostracized or wrongfully placed in prison, as well as lose massive amounts of money trying to fight in court. Not only can these all-too-real possibilities severely traumatize the child and their family, but they can also deter them from ever seeking out medical attention again.
Health care providers are ethically required to provide care that abides by the principles of nonmaleficence and justice. In the case of child abuse investigations, they are currently failing this ethical requirement and must correct their practice as soon as possible. By implementing the changes outlined in this blog and continuing to improve the child abuse investigation system over time, we can drastically reduce cases like Maya Kowalski’s before more innocent lives are irreparably damaged.