Parents in Lehigh Valley say a local doctor falsely diagnosed them of ‘medical child abuse’

Editor’s note: This story has been updated to correct medical details.

The accusations seemed straight out of a true-crime documentary: parents abusing their children by faking medical diagnoses, subjecting them to unnecessary tests and treatments — all for the attention and adulation they’d receive as the caretakers of the seriously ill.

It’s known as Munchausen syndrome by proxy, and over the last several years, the Lehigh Valley area’s child protective service agencies found itself logging more of those cases than anywhere else in the state.

Mark Pinsley, the Lehigh County controller, determined that between 2017 and 2021, doctors had diagnosed six cases in Northampton County, with a population of 300,000. Neighboring Carbon County also had one diagnosed case; Lehigh County had two. By contrast, Philadelphia, a city of 1.6 million people, had seven diagnosed cases then. The four surrounding suburban counties had none.

Pinsley and a parents’ advocacy group in the region contend that doctors at Lehigh Valley Health Network (LVHN), the area’s major hospital system, are overdiagnosing the rare psychological condition that’s been the subject of high-profile news stories and documentaries like Mommy Dead and Dearest and Take Care of Maya.

One local doctor in particular has been accused of mistaking legitimate, if complex, medical issues for abuse, by parents who lost custody of their children and were forced to spend thousands in legal bills.

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For months, the advocacy group, Parents’ Medical Rights Group, has called for an investigation into LVHN’s handling of child abuse cases and for the health network to remove Debra Esernio-Jenssen, the longtime medical director of its child advocacy center, which investigates such cases.

Last week, the health network appointed a new medical director, Sarah Kleinle, who was trained in the Philadelphia region, the Allentown Morning Call reported. Esernio-Jenssen will stay with the health network, working part-time at other LVHN facilities.

The health network has declined to comment on the move, and said in a statement that it stood by its handling of child abuse cases. Esernio-Jenssen did not return a call for comment.

Kim Steltz of Emmaus, Pa., founded Parents Medical Rights Group to advocate for the leadership change after she said Esernio-Jenssen falsely diagnosed both her and her husband with Munchausen by proxy, resulting in the loss of custody of both her children. The case was dropped after a year, and the children are now back in her care.

She said families affected by Esernio-Jenssen’s diagnoses “will never be the same.”

“You don’t bounce back from this,” she said.

A parent with Munchausen syndrome by proxy can lie or falsify medical information to make it seem like a child is sick — or, in some cases, will actively harm a child. They may be seeking financial gain or want attention and praise. In many cases, children subjected to medical child abuse, another term for the condition, will endure unnecessary surgical procedures like getting a feeding tube, or taking medication they don’t need.

Data on Munchausen syndrome by proxy’s prevalence are rare. According to Pinsley’s report, the state Department of Human Services identified 25 cases of medical child abuse between 2017 and 2021.

Still, the diagnosis can be controversial, and opinions on its validity can differ. Of the nine identified medical child abuse cases in the Lehigh Valley region, four were withdrawn by county child welfare officials, Pinsley said.

One case involved a parent from New York who had visited the area on vacation; child welfare officials in the parent’s home state determined the parent had not abused their child, he said. Others are still working with local children and youth services to resolve their cases, he said.

Many of those parents say the diagnoses they received from Esernio-Jenssen and other doctors at LVHN were not questioned until the cases made it before a judge. And the parents were alarmed by Esernio-Jenssen’s history in diagnosing the syndrome. The Lehigh Valley news station WFMZ reported last month that, while working as a pediatrician in New York, Esernio-Jenssen claimed that parents had abused their children in at least two cases that were eventually overturned.

In May of 2022, Steltz and her husband took her older son, then 16, to an LVHN emergency room. Both of Steltz’s sons have complex medical conditions.

The teenager reported that his parents were emotionally abusing him, Steltz said. That launched an investigation from the hospital’s Child Advocacy Center. Steltz provided documentation and diagnoses from specialists at the Cleveland Clinic who have treated her sons.

“I thought it was all going to be straightened out,” she said. But Esernio-Jenssen concluded that both Steltz and her husband had Munchausen by proxy — without even meeting the couple, Steltz said.

Steltz declined to go into detail about her sons’ medical conditions. She said she and her husband were evaluated by a psychologist who concluded neither of them had Munchausen by proxy.

In the ensuing case opened by the county’s Children and Youth Services, the couple lost custody of both of their sons.

In a statement, LVHN said that cases of abuse are “incredibly complex,” involving many experts and different sources of evidence. They declined to provide detail about the Munchausen cases in the area, citing patients’ privacy.

The statement noted that doctors at LVHN don’t have the final say on whether or not a child is being abused, or whether they should be taken from their family.

“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,” the health system said.

During the court battle over her sons’ custody, Steltz said, her sons were taken off medication they needed to treat their condition, and lawyers accused the couple of lying to their children. At one point, she said, an attorney from the county Children and Youth Services noted that her oldest son “had just found out his entire life was a lie.”

“I can’t describe what that’s like — to be isolated and to have no voice,” she said.

This spring, as the Steltzes prepared for another court date, planning to fly in their sons’ doctor at the Cleveland Clinic, the county dropped its custody petition. Five other parents participating in the advocacy group who were diagnosed with Munchausen by proxy have similarly seen their custody cases withdrawn or dismissed, Steltz said.

“When we say we are falsely accused, we are saying it with some objective data behind it,” she said.

Steltz and other parents and children said at a county council meeting in Northampton County last week the health system’s conclusions about their children weren’t investigated thoroughly.

Willow Feeney said she and her sister were placed in foster care after her mother was accused of falsifying their medical conditions. She told officials that her family is still traumatized by their experience.

“Growing up medically complex is a challenge in itself,” she said. “I was suddenly told that everything I felt wasn’t valid anymore. No matter how much I explained, I was told that I was wrong and I was brainwashed.”