On Aug. 23, Lehigh County Controller Mark Pinsley released the results of a review of the county’s child abuse referral and investigation process. The release of the report, called “The Cost of Misdiagnosis,” was accompanied by an outpouring of public comment by Lehigh Valley families that have experienced child removal due to allegations of medical child abuse (MCA, also known as “Munchausen’s Syndrome by Proxy”).

These parents, who have banded together under the name Parents’ Medical Rights Group (PMRG), spoke at the county board of commissioners meeting to echo Pinsley’s recommendation of a full audit by Pa. Auditor General Timothy DeFoor and sweeping reform in Children and Youth Services. Pinsley also recommended the engagement of an independent third party to review the county’s CYS procedures, the involvement of the Service Employees International Union to ensure that the input of caseworkers (who are SEIU members) is heard and incorporated into any reforms, and the requirement of a second medical opinion in any situation where CYS is considering removing children from their caregivers.

Pinsley’s report focused on the financial cost of investigating innocent parents; roughly 30 friends and family of children who were taken from their parents, as well as two attorneys, described the emotional toll of these proceedings.

Commissioner Geoff Brace, who chaired the meeting, asserted, “The County of Lehigh has a legal and moral obligation to investigate every allegation of child abuse that’s brought to their attention,” but said, “Nonetheless, these concerns must be sent to the Pa. Dept. of Human Services […] I will make sure it’s in her hands [Secretary Valerie Arkoosh, M.D., M.P.H.].”

Parental concerns

Many public commenters named Lehigh Valley Hospital Network (LVHN), and specifically Dr. Debra Esernio-Jenssen, as instrumental in separating them from their children.

“Within 30 hours of our leaving the hospital, without ever meeting my wife or me, Debra Jenssen diagnosed us with Munchausen Syndrome by Proxy,” asserted Steven Steltz, whose wife Kim also spoke at the meeting.

Ryan Whitaker of South Whitehall Township, whose wife Kimberly also gave public comment, told the story of his 11-year-old son, who has a mitochondrial disorder, and was kept by LVHN against his parents’ wishes.

“Our son spent his favorite holiday in the hospital, while Dr. Jenssen brought him toys and tried to convince [ ...] him that his parents were terrible people,” Ryan Whitaker said.

Trudy Forst of Lehigh County, who (with her husband) provided kinship care for her grandson after his removal from his parents, told the commissioners, “He was put in solitary confinement in a hospital with a guard on his door for 14 days.”

Katrina Manning of Montgomery County was employed as a nurse at LVHN at the time of her interaction with CYS. Manning described her battle to keep her son, who was found - after Manning’s then-husband was accused of physically abusing him - to have osteogenesis imperfecta (brittle bone disease), a genetic disorder carried by his father.

“Dr. Jenssen told me there is nothing genetically wrong with my son [without performing any testing], and advised me to divorce my husband, saying the only reason I hadn’t been charged was that she respected me as a nurse […],” Manning said. “Our situation could have been avoided with a simple blood test or cheek swab.”

Wynne Edelman of Delaware County, a former Lehigh Valley resident, spoke out about her daughter, who has postural orthostatic tachycardia syndrome, a type of dysautonomia known as POTS. She told the commissioners that her child has been seeing specialists for many years, and is being successfully treated with 16 different drugs and supplements - not an uncommon experience, she noted, for people with POTS.

“The damage that is being done to these children and these families scars them for life,” Edelman said. “Because a doctor is not knowledgeable about a disease, and has the power to take these children?”

Edelman also made an offer to county officials.

“I can get a nonprofit that works with experts from Johns Hopkins, the Mayo Clinic and Harvard to come to the Lehigh Valley and educate doctors, the commissioners and other interested parties. It will be free. Please,” she pleaded, “make that happen.”

Beth Alison Maloney, attorney for the Steltz family, told the commissioners, “This is not a hospital problem; this is a county problem, because the county taxpayers are paying the solicitors [and other personnel] and the caseworkers who simply rubber-stamp the allegations made at that hospital.”

She noted that although CYS withdrew its petition against the Steltzes May 23 of this year, her clients are still listed on the state’s child abuse registry, and will continue their legal fight until their names are cleared.

“It is not going to end here,” she vowed.

Timely issue

Joseph E. Welsh, executive director of the Lehigh Valley Justice Institute (LVJI), also addressed the board. While acknowledging that the commissioners do not supervise members of county government, he asserted that some of the allegations made by parents involve criminal law, and suggested that the Lehigh County district attorney begin an investigation.

“If this is an ongoing situation,” he said, “it cannot wait for the incumbent district attorney’s retirement at the end of the year. It must commence tomorrow, or be referred to the state attorney general’s office.”

Per 55 Pa. Code §130.44, the controller’s office does not have access to individual case data. Instead, the report refers to national averages and publicly available information to make the case that “there are costs to [Lehigh] county through foster care, litigation expenses, and many other costs […] beyond reasonable dispute.”

Although the controller’s office began the investigation of CYS costs by looking at ultimately unfounded accusations of MCA, the report issued notes, “It quickly became apparent that the inquiry needed to include other areas, such as shaken baby syndrome, various forms of head trauma, and other rare diseases frequently misclassified as child abuse.”

Although some amount of human error may be expected in any situation requiring judgment, the controller’s findings are disturbing: “Our investigation did not reveal a few anomalies attributable to human error,” the report declares. “Instead, our analysis showed statistical anomalies suggesting a pattern that requires further investigation.”

Psychology professor Scott Bailey, Ph.D., of Texas Lutheran University, examined the data provided by the controller’s office on MCA allegations statewide, by region, and by county. Remarking on the number of alleged MCA cases in Northampton County, Bailey wrote, “Given the seriousness of child abuse and the rarity of Munchausen Syndrome by Proxy, close examination into what is driving the high number of diagnoses in the Northeast region generally, and Northampton County specifically, appears not only merited but urgent.”

Federal review data

The stories told at the Aug. 23 meeting are consistent with the most recent federal Child & Family Services Review of the Pa. Office of Children, Youth, and Families (OCYF), performed in 2017 by the U.S. Administration for Children & Families. The state was found to be “not in substantial conformity” with federal safety outcomes such as, “Children are safely maintained in their homes whenever possible and appropriate,” “Children are, first and foremost, protected from abuse and neglect,” and “The continuity of family relationships and connections is preserved for children.”

On the flip side, federal reviewers gave Pa. OCYF high scores in timely filing of petitions for termination of parental rights.

The state’s difficulty in meeting federal standards may be due, in part, to resource misallocation. When too many reports are made, investigators are overburdened, and may be unable to spot situations in which children are in real danger. The National Coalition for Child Protection Reform, led by Richard Wexler, points to ‘child abuse panics’ in New York and Florida that led to dramatic increases in reports, but also to increases in child deaths from abuse when caseworkers were unable to cope with the higher volume. (See the accompanying article, “Counting the cost of family separations.”)

The controller’s report cites data from the Pa. Bureau of Hearings and Appeal (BHA) from 2019 through 2021 showing that more than 90 percent of child abuse allegations with an “indicated” determination are overturned on appeal. The work that case investigators do on eventually overturned cases could be seen as a waste of resources that could be better deployed on other cases.

LVHN responds

LVHN provided the following statement Aug. 24 in response to a request for comment:

“Lehigh Valley Health Network evaluates and reevaluates clinical cases and will continue to do so as appropriate. Cases of child abuse and neglect are incredibly complex and they involve multiple experts and sources of evidence. To protect patient privacy, we are unable to provide additional detail about these highly sensitive cases. LVHN clinicians do not unilaterally make the final determination whether child protective services intervention is appropriate in cases of alleged child abuse or neglect. The judicial system and child protective services make the final decision in these cases. A medical examination is only one component among many factors, including evidence, photos, and witnesses that are considered by the judicial system or child protective services.”

PMRG also released a statement Aug. 24 asserting, in part: “Contrary to the LVHN statement, the families have not experienced that [Dr.] Jenssen collaborates with their child’s medical team. And caregivers repeatedly stated that there was never any meaningful investigation or exploration before children were taken from their families.”

PMRG also noted in its news release that multiple complaints were filed against Dr. Esernio-Jenssen when she was employed by the University of Florida and was part of the Gainesville Child Protection Team. After the Florida Dept. of Health’s Office of the Inspector General investigated the complaints, the Children’s Medical Services bureau chief and UF management agreed that the doctor was “not in the right position,” and she was reassigned outside the CPT. The Press reviewed documentation related to OIG case number 20140130002 to verify PMRG’s assertion.

Pinsley’s report is available online atlehighcounty.org/Departments/Controller/Reports-Reviews/catid/381.

The full recording of the board of commissioners meeting is available online atlehighcounty.org/Departments/Commissioners/Meeting-Videos.