**The Investigation Begins**
Our audit into the puzzling proliferation of medical child abuse diagnoses began like any other audit. Establishing what the financial aspects we were going to review as well as the procedures we wanted to review. We were methodical in our data collection, we developed spreadsheets primed for analyses.
The quantitative phase of our investigation was the bedrock upon which we built our understanding of the issue. Tasked with identifying statistical anomalies in diagnosis rates, we dedicated ourselves to a meticulous examination of data that was available from the Department of Human Services. This was a task that required precision and an unwavering commitment to empirical rigor.
The initial hurdle was gaining access to the information that was needed this involved navigating a maze of bureaucratic red tape and making sure that we kept information about the people that I talked to private.
I put togther a team of people from of differing expertise. Our team, comprised of statisticians, data analysts, legal experts and medical experts. Collecting the information was like working on a jigsaw piece, where we were tasked with putting it together to form a clear picture of the landscape.
In my research, I examined Pennsylvania's annual Child Protective Services Report, which details each county's incidents of suspected and substantiated child abuse. By analyzing reports over a decade and creating a spreadsheet of counties with reported MCA cases, a pattern emerged, indicating a cluster of MCA cases around our county and two neighboring ones, all using the same hospital for child abuse diagnostics.
This report is not just a record but a guiding light for lawmakers, social workers, and community leaders, highlighting patterns that can be used to identify systemic issues and areas requiring further investigation.
This stage was crucial; it was where numbers started to tell their stories. We employed advanced statistical models to analyze the data, seeking out outliers and patterns that deviated from the norm.
My investigation took a regional focus when I began examining the Northeast region of Pennsylvania, which consists of 14 counties, including the most noteworthy—Northampton and Lehigh (the county I work for). This region's MSBP statistics were particularly striking. Despite having the smallest child population in the state, the Northeast region accounted for 40% of Pennsylvania’s total reported MSBP cases from 2017 to 2021.
The data showed that this region, with a relatively small population of approximately 27,000 children, had a disproportionately high number of MSBP cases. As I delved deeper into the numbers, I observed that the region had fewer annual child abuse cases and also fewer reports of serious mental injuries to children compared to other regions in Pennsylvania. Yet, it consistently reported the highest number of MSBP cases.
Among the 14 counties in the Northeast region, only four reported MSBP cases between 2017 and 2021. Northampton and Lehigh Counties were the most significant, accounting for 80% of the region’s total MSBP cases. This concentration of cases in just two counties, despite their relatively small combined child population, was a compelling anomaly that needed deeper exploration.
To contextualize the findings from Northampton and Lehigh Counties, I compared them with other regions and counties in Pennsylvania. The Southeast region, which includes Philadelphia, had the second-highest number of reported MSBP cases, yet its incidence rate per 100,000 children was much lower than that of the Northeast region. Philadelphia, with a much larger child population, reported only slightly more MSBP cases than Northampton County, emphasizing the latter’s outlier status.
This comparative analysis highlighted significant discrepancies in MSBP reporting and diagnosis across the state, suggesting that local factors in the Northeast region were uniquely influencing these rates. The comparison underscored the need for a more nuanced understanding of MSBP and tailored intervention strategies.
Our investigation into the prevalence and impact of misdiagnoses of medical child abuse was both rigorous and exhaustive. We embarked on this journey with a dual approach designed to dissect the issue from both a statistical and a human perspective. As the initial tabulations came together, their cold, dispassionate digits failed to capture the human stories behind each percentage. It became clear: no array of figures or probability charts could adequately convey the complex realities hidden between the numbers.
So we embarked on a parallel track, a more solemn pursuit of the living stories pulsing beneath the rows of ordered numbers. Every decimal contained a kernel of human anguish gasping for air - a parent's shriek of injustice strangled by a physician's bias...or a child's whimper muffled under a pediatritians dogged but misguided diagnostic crusade.
Our quest demanded expanding the inquiry's aperture beyond quantitative models. We had to exhume the beating hearts within each cold data column. Follow the frayed trails of wrenching decisions and derailed lives. It was the qualitative research that brought depth and color to our investigation. This phase involved interviewing families who had experienced misdiagnosis and the professionals who were part of journey the famlies had to experience.
We were about to hear the quiet cries of families shattered by hasty diagnoses. We were going to learn about children and families torn apart by rushed medical judgments. We would meet parents who had drained their savings accounts, borrowed against their 401k and liquidated money meant for their childs college. Their money was spent fighting off accusations of medical child abuse—accusations made with a disturbing level of certainty but backed by little evidence.
Each interview was approached with sensitivity and a profound respect for the personal stories being shared. These interviews were conversations, often emotional, always significant. They provided insights that numbers alone could not.
We spoke with many lawyers and therapists around our area. They were all familiar with the doctorg. Many of them were concerned about her, but they had been unwilling to speak up.
The challenge was in weaving together the quantitative and qualitative threads to tell a compelling and true story. This wasn't just about crunching numbers or analyzing patterns; it was about honoring the real people and their trauma behind the data. Many of these liveswere derailed by medical misdiagnosis.
For weeks, my team and I were knee-deep in both spreadsheets and personal stories. The process was meticulous and often emotionally taxing. Each case we studied was a narrative of hope, despair, frustration, and sometimes, redemption. Our goal was to bring their stories to the forefront, to ensure that their experiences were heard and acknowledged.
In doing so, we hoped not just to inform but to influence. we intended to champion systemic reforms in the procedures used by Children and Youth Services for removing children from their homes. We wanted to spark discussions, to prompt reevaluations of protocols, and to drive home the point that behind every misdiagnosis was a person whose life could be profoundly affected.
As we pieced together the data and narratives, patterns began to emerge, revealing not only misdiagnoses of MSBP but also Shaken Baby Syndrome, Nonaccidental Head Trauma, and many other medical child abuse issues. These patterns formed the basis of our conclusions and recommendations, highlighting systemic flaws that urgently needed addressing.
My research into understanding Children and Youth prompted me to delve into Beth Maloney's book, *Protecting Your Child from the Child Protection System*. Her book because an indispensable guide, where she fearlessly explored the nightmarish possibility of losing one's child to government intervention. Her comprehensive insights into how the system operates, the hidden processes, and vital advice for those unjustly accused resonated deeply with the patterns we had uncovered.
Maloney asserts that while Child Protection Services (CPS) are designed to safeguard children, their actions can sometimes exceed their mandate. Instances where children are removed from safe homes are not uncommon. Her narrative highlights how even well-meaning parents can unwittingly make mistakes that have dire consequences. She delves deeply into the concept of "medical kidnapping," where parents of children with complex medical needs face wrongful accusations of abuse. Her book lays out strategies to navigate these treacherous waters.
*Protecting Your Child* provides a detailed walkthrough of a CPS case from the initial investigation to navigating the complex maze of legal procedures. It addresses crucial questions about parental rights and various CPS scenarios, equipping readers with knowledge to protect their families.
Beth Maloney takes us on a deep dive into the child protection system, exposing how good intentions can sometimes lead to terrible mistakes. As she expertly explains, the very tools meant to shield children can unintentionally turn into weapons of wrongdoing and point at parents as being child abusers even though they are not. Actions of parents are picked apart. This is particularly true for parents of children with complex medical needs. Parent who find themselves unjustly in the crosshairs. A healthcare professional's misinterpretation of frequent doctor visits—seen not as the actions of a concerned parent but as potential abuse—underscores the fragile balance between vigilance and overreach in our system.
Maxine Eichner, a distinguished professor at the University of North Carolina School of Law, offers a compelling extension of Maloney’s concerns in her article "Bad Medicine." Eichner dives into the legal and medical frameworks that underpin child protection policies, highlighting how these can fail the very families they are meant to safeguard. Her detailed analysis exposes the foundational flaws in the Medical Child Abuse (MCA) theory, echoing Maloney's warnings by demonstrating how these legal and medical paradigms not only disrupt but sometimes dismantle family integrity under the guise of protection.
analysis.
In her article "Bad Medicine," Eichner criticizes the increase in MCA charges, which are often based on precarious legal and medical foundations. These charges, though meant to protect, can unjustly strip parents of their rights and lead to improper treatment. She points out how the medicalization of child abuse claims blurs the lines between medicine and law, rendering parents powerless in decisions concerning their child’s health. The lack of rigorous legal scrutiny in these cases allows for the perpetuation of these issues without adequate checks on the misuse of authority in child welfare.
Eichner's work highlights the inherent dangers in these systems, which can sometimes harm the very families they are meant to protect. Her call for a thorough review of child protection policies is both urgent and compelling.
In the realm of medicine, the birth of a new diagnosis can be as dramatic and fraught as the conditions it seeks to define. This was certainly the case with Munchausen Syndrome by Proxy (MSBP), a disorder that crept into the medical consciousness under a cloud of intrigue and skepticism in 1977.
The story pivots around a British pediatrician, Dr. Roy Meadow, whose name would become synonymous with both the discovery of MSBP and the controversies that followed. Meadow was a respected figure, a professor at the University of Leeds, and it was during his practice that he encountered a perplexing case: a child with symptoms that did not match any known medical condition and seemed only to present when the mother was near.
Dr. Meadow's medical instincts led him to a disturbing hypothesis. Could it be that the child's primary caregiver was fabricating or inducing these symptoms? He published his theory in 1977, coining the term "Munchausen Syndrome by Proxy," after the well-known Munchausen Syndrome, where individuals feign illness for attention. MSBP, he proposed, was an alarming twist on this: a caregiver, typically a parent, induced or fabricated illness in a child to gain sympathy, attention, or other psychological rewards.
The medical community received Meadow’s proposal with a storm of skepticism. How could a parent, especially a mother, deliberately harm her child? Yet as more cases surfaced with similar patterns, the skepticism gradually gave way to a grudging acceptance. MSBP entered medical textbooks as a legitimate, if rare, diagnosis.
However, acceptance did not mean the controversy abated. Diagnostic criteria were vague: there was no definitive test for MSBP, and diagnoses were often based on the subjective interpretation of a child’s symptoms and the behavior of the caregiver. The potential for misdiagnosis was high, and the stakes were immense—accusations of MSBP could tear families apart, lead to criminal charges, and even result in children being permanently removed from their homes. Diagnosisng MSBP was more about getting rid of
The intersection of medicine and law brought further complications. Cases of suspected MSBP often ended up in court, with doctors’ testimonies pitted against desperate parents defending their care of their children. The diagnosis of MSBP could hinge on the interpretation of ambiguous medical evidence and the persuasive power of expert witnesses.
In this fraught arena, Dr. Meadow’s authority was both a blessing and a curse. His expertise lent credence to the diagnosis of MSBP, but his involvement in several high-profile court cases, where parents were accused—and sometimes wrongly convicted—of harming their children, led to intense scrutiny and criticism. The most notable of these was the case of Sally Clark, a mother wrongfully convicted of murdering her two sons based on Meadow’s testimony that the probability of two natural unexplained infant deaths in the family was astronomically low. Her conviction was later overturned, highlighting the dangers of relying too heavily on expert opinion in complex medical-legal cases.
The controversies surrounding MSBP and its successor, MCA, were deeply intertwined with legal consequences. Parents found themselves accused of this severe form of abuse often faced not only the potential loss of custody but also criminal charges. The legal system, heavily reliant on medical expert testimony, found itself grappling with the complexities of medical diagnoses that bore direct impacts on parental rights and child welfare.
It's evident that while these diagnoses aim to protect vulnerable children, they also carry the potential for misuse and profound consequences for families.
Maxine Eichner, in her analysis presented in "Bad Medicine," critiques the broad application and the diagnostic criteria used for Medical Child Abuse (MCA), which evolved from Munchausen Syndrome by Proxy (MSBP). Her focus is more on the legal and practical implications of how these diagnoses are used, especially in legal contexts, rather than outright denying the existence of MSBP.
Eichner highlights the dangers of over-diagnosis and the potential for abuse of these medical theories by professionals, which can lead to wrongful accusations against parents. She is particularly critical of how the broad definitions and subjective diagnostic criteria of MSBP and MCA can ensnare parents who are simply advocating for their children with complex medical needs.
While she does not deny that there are cases where caregivers might intentionally harm children to gain attention—a core aspect of MSBP—she is concerned about how the diagnosis is applied and its implications. Her work suggests that she believes the concept of MSBP has been used beyond its appropriate scope, often leading to significant legal and personal consequences for families without sufficient justification. Thus, her critique is more about the application and recognition of MSBP in the medical and legal fields rather than its existence per se.
Diagnosing MSBP can be challenging because the symptoms presented are often intentionally produced or exaggerated by the caregiver, mimicking genuine medical conditions.
Several medical conditions and situations might be mistaken for MSBP because they can present with complex, variable, or puzzling symptoms that are difficult to diagnose or are inconsistent over time. Here are a few:
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1. **Mitochondrial Diseases**: These are a group of disorders caused by dysfunctions in mitochondria, the energy-producing components of the cell. Symptoms can be nonspecific, variable, and affect multiple organ systems, often leading to misdiagnosis or suspicion of fabricated illness.
2. **Ehlers-Danlos Syndromes (EDS)**: EDS are a group of disorders that affect connective tissues and can present with a wide range of symptoms, including joint hypermobility, skin that stretches easily, and fragile tissues. The variability and subjective nature of symptoms like pain or fatigue can sometimes be mistaken for exaggeration or fabrication.
3. **Autoimmune Disorders**: Conditions like lupus or multiple sclerosis can have symptoms that fluctuate significantly, sometimes without clear medical evidence at every stage. This can confuse the clinical picture and potentially lead to suspicions of MSBP if not carefully evaluated.
4. **Rare Genetic Disorders**: Many rare diseases can present with unusual or varying symptoms that do not fit typical diagnostic patterns, potentially leading to misunderstandings about their origin.
5. **Allergic Conditions**: Severe or atypical allergies might not always be easily diagnosable through standard tests and could present with symptoms that seem disproportionate or inconsistent.
6. **Gastrointestinal Disorders**: Conditions like cyclic vomiting syndrome or abdominal migraine are characterized by episodic symptoms that could be seen as inconsistent or exaggerated without thorough evaluation.
7. **Psychiatric and Neurological Conditions**: Disorders such as conversion disorder (functional neurological symptom disorder), where psychological stress is converted into physical symptoms, can be mistaken for MSBP when symptoms appear medically unexplained.
In each of these cases, the symptoms might be real but can be intermittent or difficult to explain with standard medical testing, leading to potential misinterpretation as MSBP. Accurate diagnosis requires careful, comprehensive evaluation by specialists familiar with these conditions, often using a multidisciplinary approach to ensure that both the caregiver's and the patient's medical and psychological needs are appropriately addressed. This approach helps prevent the misdiagnosis of MSBP and ensures that genuine underlying medical issues are treated effectively.
The diagnosis of MSBP has always been contentious, heavily reliant on subjective judgments, and prone to leading to wrongful accusations. In response, the terminology has evolved to terms like "Pediatric Condition Falsification" and "Factitious Disorder Imposed on Another," which focus more on the act of abuse rather than the caregiver's motivations. These changes aim to refine the approach within child protection systems, ensuring interventions are based on solid evidence and safeguarding the rights of the accused.
As I dove deeper into the complexities of MCA for my investigation, the significant influence of media and popular culture became increasingly evident. Sensationalist media portrayals often skew public understanding by focusing on extreme cases, leading to misconceptions and heightened fears about the prevalence and nature of these abuses.
Yet, the media also plays a crucial educational role. Investigative pieces and documentaries that delve into the nuances of MCA cases are invaluable for raising awareness, aiding in early detection and prevention, and equipping the public with the knowledge necessary to identify potential warning signs.
The Sandusky scandal at Penn State was a watershed moment that significantly altered Pennsylvania's approach to child protection. The Sandusky scandal, named after Jerry Sandusky, a former assistant football coach at Pennsylvania State University (Penn State), was one of the most notorious and shocking sexual abuse scandals in the history of American sports. The scandal came to public attention in 2011, although the abuses dated back to the 1990s.
Jerry Sandusky was found to have sexually abused numerous young boys. The abuse often took place at Penn State facilities, and allegations later surfaced that university officials had been aware of Sandusky's actions but failed to act appropriately. In 2012, Sandusky was convicted on 45 counts of sexual abuse and was sentenced to 30 to 60 years in prison.
The fallout from the scandal was extensive. It deeply tarnished Penn State's reputation, led to the firing of the university’s beloved head football coach, Joe Paterno, and the resignation of several high-ranking university officials. The scandal led to significant legal and organizational changes at Penn State but also influenced Pennsylvania laws. One of the largest changes was the addition of mandatory reporting where if you are a mandatory reporter you can be sued if you do not properly report even the suspicion of child abuse.
These new, tougher rules meant to protect kids also mean there's a higher chance that parents who haven't done anything wrong could be unfairly accused. This situation shows the tough spot we're in—trying to make sure kids are safe without mistakenly targeting innocent parents.
Throughout my investigation, I learned about the profound emotional toll on parents willing to share their experiences. Many feared that speaking out would only reinforce public perceptions of them as potential abusers, a stigma fueled by media dramatization and societal misconceptions. This fear has silenced many, complicating efforts to uncover the truth of their situations.
Parents of children with complex medical needs find themselves in a particularly precarious position, caught between ensuring their children receive necessary medical care and avoiding suspicion of abuse. This delicate balance is made all the more challenging by a society quick to judge and slow to understand the complexities of such medical and psychological realities.
It was crucial to create a space where parents could openly discuss their struggles without fear. When we did our investigations, we didn't use real names or keep the real names of the parents or children. We gave families unique colors and would refer to them by their color. We would also give the children diffent fictious names. The goal of this was to help the parents feel safe in telling their stories.
## Internal Education
In Lehigh County, we have a few key agencies that work together to support families and children. The Department of Human Services, or DHS, is like the umbrella organization. They handle a wide range of social service programs, covering everything from public assistance and mental health to support for people with intellectual disabilities and those struggling with drug and alcohol issues. Their goal is to help individuals and families in need across the county.
One of the critical parts of DHS is the Children and Youth Services, often just called CYS. This office specifically focuses on protecting and promoting the welfare of children and youth in our community. They’re the ones who step in to investigate reports of child abuse and neglect. Beyond that, they provide support services to families to help them stay together and make sure kids are in safe and permanent homes. CYS plays a crucial role in ensuring the safety and well-being of our youngest residents.
I needed to understand how Children and Youth Services operated and how the county government decided to remove children from their parents. To get a clear picture, I arranged a meeting with Kay Ackenbach, the Director of the Department of Human Services for the county. Kay holds an appointed position, meaning she works directly for the county executive. Think of the executive as the mayor of a city, but in this case, he oversees the entire county.
I spent some time with Kay, catching her up on the TikTok video and the meeting with the three ladies. Kay was already familiar with Kim and her husband’s situation. The government had some concerns that they might sue, which is always a bit of a headache, but suing the government is notoriously tough. Even though Kay was worried, it wasn’t like her world was going to come crashing down.
Curious about the process of removing a child from a home, I asked Kay if she could walk me through it. She suggested I talk to the solicitors who handle these cases directly. They’d have the most accurate information. In our county, solicitors are the internal lawyers. They’re the ones who keep the county out of legal trouble and represent us when issues arise. They’re also an invaluable resource for the leadership, a go-to for questions and reliable answers.
To get the detailed answers I needed, Kay suggested I talk to Kerry and David, our county solicitors. These are the internal lawyers who handle legal issues and keep the county out of trouble. They also serve as a valuable resource for county leadership, answering questions and providing guidance.
Armed with Kay’s suggestion, I reached out to Kerry and David to set up a meeting. As I prepared for our conversation, I realized how critical their insights would be in understanding the complexities of the child removal process.
When the meeting day arrived, I gathered my notes and questions, ready to dive into the intricate procedures and standards that guide child protective services. Kerry and David were welcoming and professional, their demeanor calm and collected—traits honed from years of navigating legal complexities.
I started by asking them to explain the process followed when deciding whether to pursue custody of a child. They laid out a detailed overview, emphasizing the importance of evidence and the rigorous standards used to make such weighty decisions. It became clear that the criteria for seeking custody were stringent and validated by multiple layers of oversight to ensure fairness and accuracy.
Kerry began by explaining that the process usually starts with a report from a mandated reporter—professionals like teachers, doctors, or social workers who are legally required to report any suspicion of child abuse or neglect. A report goes to Childline which is operated by the state government. When a report is made it is then routed to the proper county where Children and Youth Services (CYS) conduct an initial assessment to determine if the child is in immediate danger. This involves interviews with the child, parents, and other relevant individuals, as well as a review of any physical evidence.
If the child is deemed to be in immediate danger, CYS can take emergency custody without a court order. David explained that an emergency custody hearing must be held within 72 hours. During this hearing, a judge reviews the evidence to determine if the emergency removal was justified and decides whether the child should remain in temporary custody or be returned home.
If ongoing intervention seems necessary, CYS files a dependency petition with the court. This petition alleges that the child is should be removed due to abuse, neglect, or other circumstances. Kerry highlighted that a preliminary hearing is held within ten days of the petition being filed to determine if there is probable cause to believe the child should be removed from their home.
David then outlined the dependency hearings process. The adjudicatory hearing, typically held within 60 days of the dependency petition, is a formal court proceeding where evidence is presented, and witnesses may be called to testify. The judge determines if the child is dependent based on the evidence. If the child is found to be dependent, a disposition hearing follows, where the court decides the best plan for the child's care. This could include returning the child home under supervision, placing the child in foster care, or other arrangements.
Kerry explained that permanency hearings are held regularly, at least every six months, to review the child's status and the progress of the case. The goal is to ensure that the child achieves a stable, permanent home as quickly as possible. Efforts are made to reunify the child with their parents if safe and appropriate, which can include providing services such as counseling, parenting classes, and substance abuse treatment. If reunification is not possible, the court may consider other permanency options, such as adoption, guardianship, or placement with a relative.
Concerned about potential biases in decision-making, I inquired about checks and balances within the system. Kerry and David assured me that various mechanisms are in place, including regular audits and reviews by independent bodies. These safeguards are designed to catch and correct any deviations from established protocols.
During our conversation, Kerry and David used several key terms frequently employed in child welfare cases:
- **Indicated**: This means that the investigation found enough evidence to support the allegation of abuse or neglect. This only requires the sign off of a caseworker, their boss and a solicator. It does not require a judge or jury.
- **Founded**: This indicates that the allegations have been substantiated by clear and convincing evidence, often leading to legal action. This status must come from a judge.
- **Unfounded**: This term means that the investigation did not find sufficient evidence to support the allegations, and the case is typically closed.
Given the controversy surrounding Dr. Jenssen, I asked about the training and expertise involved in these cases. Kerry noted that professional training comes from accredited institutions and ongoing education, with input from various specialists, including Dr. Jenssen and her team. However, they acknowledged the importance of transparency and continuous improvement in training programs.
I was also interested in the mechanisms available for parents to appeal against custody decisions. David explained that parents have several avenues for appeal, ensuring their voices are heard and their rights are protected throughout the process. This was crucial information, reflecting the system’s commitment to fairness.
I left the meeting with Kerry and David more determined than ever to dig deeper. According to them, there should be enough checks and balances in place to prevent the kind of issues Kim had mentioned. This raised a critical question: was this an isolated incident affecting just one family, or was there a deeper systemic problem?
I now had a flowchart detailing all the steps in the child removal process and what was supposed to happen at each stage. My next step was to go back to Kim and see if her timeline matched the process Kerry had outlined.
NOTES - NOT A PART OF THE CHAPTER
Balancing parental rights and child protection remains a complex ethical challenge, deeply influenced by American values, cultural norms, and societal perceptions. It is imperative that society respects parental rights while actively preventing and responding to abuse, requiring vigilant intervention policies, comprehensive support systems, and an adaptable legal framework.
As my investigation continues, our guiding principle must be a steadfast commitment to fairness, education, and empathy, ensuring that no voice is silenced, and no child is left unprotected.
I started going through cases that Dr Jennssen was a part of.
_The court is saddened by what has happened here as a result of an insufficiently substantiated accusation of Shaken Baby Syndrome. Dr Jensen's failure to identify and adequately rule out the various potential causes of bilateral subdural hematomas in this child, and her misdiagnosis of the child as suffering from subarachnoid bleeding, caused her to jump to many conclusions including the conclusion that the child's injuries were caused by violent shaking. There are far too many abused children in our society. This court's role is to try to ensure, to the extent possible, that children are protected from abusive and neglectful parents. It is tragic that a medical misdiagnosis and an inappropriate rush to judgment has resulted in these loving, caring, dedicated parents being separated from their sickly child. Thankfully, in this case, visitation has been liberal._