Like Maya's family, these parents also had been separated from their children due to allegations of "factitious disorder imposed on another" -- more commonly known as Munchausen syndrome by proxy (MSBP) -- made by staff at Lehigh Valley Health Network (LVHN) over the past several years.
In 2014, LVHN hired child abuse pediatrician Debra Esernio-Jenssen, MD. Jenssen had been the medical director of the child protection team at the University of Florida from 2010 to 2014, after serving in a similar role at Schneider Children's Hospital in New York.
At LVHN, Jenssen promoted a protocol for screening pediatric patients for abuse, called "Every child, every time." She was also instrumental in setting up LVHN's John Van Brakle Child Advocacy Center (CAC) in 2015, in coordination with then-Lehigh County Executive Thomas Muller. Since the CAC's establishment, LVHN has received hundreds of thousands of dollars in grant money from the Pennsylvania Department of Human Services, including $231,954 to improve its CAC, which has still not received full accreditation by the National Children's Alliance.
In 2021, the district attorney of neighboring Northampton County, Pennsylvania, signed an agreement with the Lehigh County district attorney to use the CAC. Since then, virtually every child abuse report in these two counties has been medically evaluated by Jenssen's team -- including reports originating within LVHN hospitals and affiliated pediatric practices.
In June 2022, one of two sisters temporarily taken from their parents by Northampton County during CAC evaluations of MSBP allegations contacted the editor of a local paper, which published an investigative series on the accusations. This family was not alone. Other families accused of MSBP had begun to find each other, and had started an advocacy group called Parents' Medical Rights Group (PMRG).
Unbeknownst to most Lehigh Valley families, Jenssen's professional record was checkered. She was removed from her role leading the University of Florida child protection team in 2014. Multiple family court judges in New York described her as a combative and unreliable witness. One Queens County judge noted that Jenssen "rigidly rejected any alternative to her favored scenario, despite advice from her own child abuse team."
PMRG co-founder Kim Steltz contacted Lehigh County Controller Mark Pinsley about what seemed to her like an overzealous doctor unfairly accusing parents of medically complex children. The controller inquired into Jenssen's past and the MSBP numbers in Lehigh Valley.
Concerned that there was a pattern in the area served by the CAC, he performed a non-audit service, which gave him a general view of expenditures using publicly available data. (The controller does not have access to confidential case data, although some families voluntarily shared their records with him.)
The non-audit service uncovered a higher rate of MSBP diagnoses in the Northeast region (which includes the Lehigh Valley) than other regions of Pennsylvania. In the Northeast, there were 2.6 cases per 100,000 children; in the Southeast, by contrast, there were 0.7 cases per 100,000 kids.
Pinsley saw costs: Harm to innocent families, and the diversion of caseworker resources from investigating situations of immediate danger.
"This isn't just about one problematic doctor. It's a process issue," he told MedPage Today, adding, "We can make other decisions [such as medical guardians] to ensure children's safety. We don't always need to remove children 'when in doubt.'"
On August 23, at the Lehigh County board of commissioners meeting, the dam broke. Thirty people from affected families offered public comment about the unjust family separations they alleged they had endured based on CAC evaluations and resulting actions taken by the Office of Children and Youth Services (OCYS).
Some who spoke were members of PMRG. Others had been accused of physical abuse, rather than MSBP, but felt that their explanations had fallen on deaf ears -- explanations including children's underlying medical issues, such as osteogenesis imperfecta and oral phase dysphagia.
Virtually everyone who spoke named Jenssen as instrumental in their family separations. Steltz testified that "Expert physicians, teachers, and school staff tried to get a hold of OCYS, but none of it mattered."
Controller Pinsley spoke, announcing his findings and recommending changes. He believes OCYS should seek a second opinion from a medical specialist (outside LVHN) regarding a child's previously diagnosed illness before removing a child from the home. He also wants the county to bring in a third party to assess OCYS processes.
After initially supporting Jenssen in public statements, LVHN moved her out of the CAC and replaced her with Sarah Kleinle, DO. Jenssen continues to work in pediatrics at LVHN.
When reached for comment, LVHN provided a statement to MedPage Today from October that noted less than 0.5% of children who visited the children's hospital last year "were referred for suspicion of child abuse" and that its top priority is "always to protect the health and safety of our patients."
Lehigh County Department of Human Services committee meetings to discuss current OCYS policies and potential changes began October 18 with a meeting dominated by committee chairman Bob Elbich. He revealed that the county outsources all its statutorily mandated investigative responsibilities to the CAC, over which -- according to Elbich -- the county has no influence or control. Elbich reiterated that the CAC is independent of the county.
The next Human Services committee meeting was scheduled for mid-November, but after PMRG publicly endorsed law firm Francis Alexander for parents seeking help, commissioner Elbich canceled the meeting. Elbich told MedPage Today, "With the announcement that probable lawsuit(s) may be filed against LVHN and possibly Lehigh County, the atmosphere is no longer conducive to open dialogue. Therefore, at least until the end of my term in December, there will be no separate committee meetings held."
PMRG leader Steltz asserted, "You can't really stop or delay something that was never meaningfully started in the first place. It has been almost three months and nothing has changed. Continuing to delay corrective actions only causes more families to be harmed by false allegations of child abuse."
https://www.medpagetoday.com/special-reports/exclusives/107490
No one wants to see a child harmed, whether the bad actor is a parent or another adult. However, some families unjustly accused of child abuse, as well as family rights advocates, argue that the system is biased too far in the direction of suspicion and doesn’t demand enough proof before separating parents from their children – particularly when it comes to the relatively new accusation of “medical child abuse.
” Chronic or complex medical conditions afflicting children, mandatory child abuse screening as part of the pediatric hospital admissions process, and deference shown by courts and other physicians to child abuse pediatricians can combine to tear apart families where no wrongdoing has occurred.
This is the first article in a three-part series delving into the concept of medical child abuse and how it affects families challenged with unusual medical conditions. In this series, we share the perspectives of affected families, family rights attorneys, and legal scholars to illuminate this dark corner of the child protection system and point a way toward the better future that is possible.
Research for this series began with an email from a young Lehigh Valley person who, along with a sibling, was separated from their parents for months. Family members were reluctant to speak to the press, but felt it was important to share their story.
A truancy investigation regarding one child rapidly became child abuse investigations concerning both children in the family. Child abuse pediatricians (CAPs) told the siblings, who suffered from multiple chronic conditions, that they were not ill. Rather, the doctors told them, they were victims of their mother, who – the doctors said – pretended the children were ill and sought unnecessary medical treatment for them, an unusual diagnosis known as “Munchausen Syndrome by Proxy” (MSBP). The diagnosis is even more unusual, given that the doctor who made it had never met the children’s mother.
County child protection workers obtained emergency court orders to take the children away from their parents, based on the CAPs’ evaluations of the children and a limited set of their medical records.
After spending time in a local hospital to be “de-medicalized” – taken off multiple treatments they had been receiving for their chronic conditions – both children were placed in “kinship care.” During the time they were out of their parents’ custody, neither child was permitted to meet with their previous health care providers, despite the fact that these providers were affiliated with major research hospitals and had been seeing the children for years.
The family’s longtime medical providers stood by them, willing to testify. The mother underwent a comprehensive mental health evaluation, during which a forensic psychologist determined that she did not have MSBP. A non-jury hearing was eventually scheduled so that the family’s evidence could be heard, but it was abruptly canceled by county child protection workers.
After months of hearings before a local magistrate, the children were returned to their parents’ custody. Case workers and visiting nurses from the county visited the family regularly to monitor the situation. Then, months after the investigations began, the county’s case workers chose to terminate the case. Having witnessed the children’s interactions with their parents, they no longer found the original abuse “diagnosis” by the CAPs credible. Both young people are now living with their parents, and they have resumed the majority of their medical treatments.
But a shadow still hangs over the family.
“Because [my younger sibling] is still underage, we’re still afraid,” the older sibling explains. “Anything that anyone might say could lead to her getting reported again and taken away. Once they’re in your life in the first place, it’s much easier for them to get back in.”
When doctors’ disagreements become allegations against parents
Attorney and author Diane Redleaf has spent decades defending families accused of abuse and neglect, as well as writing about the challenges of vindicating family rights when CAPs have claimed to have professional certainty that abuse has occurred.
Redleaf has experience with accusations like the one leveled at the Lehigh Valley family mentioned above. In these situations, children who have challenging medical conditions requiring frequent treatments are flagged as victims of MSBP, and parents are diagnosed – often by a doctor who has spent little or no time with them – as having a psychological disorder in which they pretend their child is sick, and subject the child to unnecessary medical treatments, or make the child sick, in an aberrant bid for attention for themselves.
Maxine Eichner is the Graham Kenan Distinguished Professor of Law at the University of North Carolina. Although she specializes in legal issues surrounding family relationships and social welfare law and policy, Eichner realized several years ago that classes on family law were not preparing nascent attorneys for the way the system treats cases of alleged medical child abuse.
Eichner’s daughter, who has mitochondrial disease, encouraged her to join a task force on medical child abuse organized by MitoAction, an advocacy group. “I went to the first meeting,” she relates, “and heard these parents talk about what had happened to them […] and I was flabbergasted, because there’s nothing that I teach in class that matches what had happened to them, and nobody else I knew who was teaching family law was teaching anything about the way things were happening on the ground.”
Realizing that both parents and members of the legal community were being blindsided by allegations of abuse, Eichner traced the evolution of “medical child abuse” (MCA) from its beginnings as “Munchausen Syndrome by Proxy” (MSBP) – a condition first described in 1977 by UK physician Roy Meadow – to its current, much larger footprint. She has published law review articles and pieces in the mainstream media to help people understand cases like that of Justina Pelletier, a girl held for more than two years by Boston Children’s Hospital – mostly in a psychiatric unit – because doctors there disagreed with doctors who had previously treated her at Tufts University Hospital.
In the early days, Eichner explains, mothers had to be intentionally making their children sick or deliberately lying about a healthy child having symptoms to be charged with MSBP. Mothers could sometimes disprove the accusation by demonstrating that their child had a genuine medical condition.
Then things got trickier for parents.
Starting in the mid-1990s, Dr. Carole Jenny, a pediatrician specializing in child abuse, and her husband, Dr. Thomas A. Roesler, a psychiatrist, reconceptualize[ed] the condition, Eichner explains. Doctors, they said, shouldn’t focus on the parent’s mental state but, instead, simply determine whether the child had received unnecessary and harmful, or potentially harmful, care at the behest of a parent.
Problematically, in Eichner’s view, Drs. Jenny and Roesler defined “potentially harmful” to include any unnecessary medicine or diagnostic test that could have harmful side effects, even if the child wasn’t actually harmed and should be labeled medical child abuse, and treated like any other kind of child abuse.
In other words, the doctors believed parents should be charged with abuse based solely on the opinion of one doctor that their children were receiving “too much” medical care.
Eichner noted there are problems with relying on Dr. Meadow’s original paper for diagnoses.
“Case studies are not empirical studies that have a control group,” she explained, and later studies tend to suffer from confirmation bias. Moreover, she pointed out that MCA extends Meadow’s original idea into families who are grappling with real illnesses. Mothers said to have MSBP “were said to be making kids sick, or lying [that their kids were sick]. They were [supposed to be] a risk to healthy kids.
Today, most of the cases in which parents are accused of MCA, the kid has some kind of underlying issue, and there’s very little evidence to suggest that the parent is intentionally making the kid sick. They’ve taken that model of the Munchausen mother, and transposed it to MCA, and the idea now is that if they think a parent is giving a kid with real medical issues ‘too much care,’ they’re certain they’re going to hurt the healthy siblings, too.
“But there’s no good science to show that parents of genuinely sick kids respond anything like the way that those original ‘Munchausen’s mothers’ responded,” Eichner said.
In 2007, the American Academy of Pediatrics’ Committee on Child Abuse and Neglect adopted the definition of MCA, broadening significantly both the role of the nascent specialty of child abuse pediatrics and the scope of situations that would be reported as abusive.
Family rights attorney Aaron Rapier says that a variety of labels can lead to good parents having their children taken away from them.
“This has been my experience with ‘Munchausen Syndrome by Proxy,’ or ‘factitious disorder imposed upon another,’ or ‘medical child abuse,’” Rapier said. “Any one of those things means whatever the child abuse pediatrician says it means.”
He further explains, “Unlike essentially any other diagnosis you could name, there are no published or generally accepted criteria against which a third party could apply the facts to assess whether the diagnosis is correct.”
“In medicine, we can accept that there are differences of opinion,” Rapier said. “There are reasonable interpretations within the standard of care.” However, he contends, all too often, when a CAP diagnoses MCA, other physicians’ opinions are not sought before the child is removed from his parents’ care.
https://www.lvpnews.com/20220905/when-child-protection-goes-awry/
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