- About 40 people protested at Lehigh Valley Hospital Wednesday
- Many said they or someone they knew had been falsely accused of medical child abuse by LVHN doctors
- Lehigh County Controller Mark Pinsley published a report last week about what he calls a “systemic overdiagnosis” of medical child abuse in the county
ALLENTOWN, Pa. — Lehigh Valley Health Network has been accused of over-diagnosing medical child abuse, and now, parents are taking action.
About 40 people protested at Lehigh Valley Hospital's campus at 17th and Chew streets in Allentown on Wednesday afternoon.
They stood across the street from the hospital’s entrance, holding signs that said, “Stop Medical Kidnapping” and “Fire Dr. Jenssen.”
“We are back now, and we will be back again until the appropriate action is taken.”Kim Steltz, founder of the Parents' Medical Rights Group Greater Lehigh Valley Chapter
Many said they or someone they knew had been falsely accused of medical child abuse by LVHN doctors, particularly Dr. Debra Esernio-Jenssen, the network’s child abuse pediatrics specialist.
Medical child abuse formerly was known as Munchausen syndrome by proxy. It happens when a caregiver deliberately fabricates or induces an illness in someone under his or her care, often to gain attention or sympathy.
The protest follows a report released last week by Lehigh County Controller Mark Pinsley that alleges “systemic overdiagnosis” of medical child abuse.
Kim Steltz, who founded the Parents' Medical Rights Group Greater Lehigh Valley Chapter, organized the protest and spoke at it.
“We made it clear to the commissioners a week ago that we are not going to let this issue go,” Steltz said. “We are back now, and we will be back again until the appropriate action is taken.”
When asked about the protest, LVHN Media Relations Specialist Jamie Stover said in an email that the health group “respects everyone’s constitutional right to protest so long as it is done safely and not on our campuses so it doesn’t cause any interruptions or interference with patient care.
“Lehigh Valley Health Network [LVHN] evaluates and reevaluates clinical cases and will continue to do so as appropriate."
Last week’s demonstration
The protest is not the only public action the group has taken.
A crowd of about 70 people who said they have been affected by false accusations of medical child abuse were at the Lehigh County Commissioners meeting last week.
Following Pinsley's report of "systemic overdiagnosis,"LVHN sent an emailed statement last week that said the controller’s office has “no jurisdiction over the CAC, nor the clinical credentials to conduct a review of a clinician or the services rendered by a clinician.”
“Due to the sensitive nature of their work, physicians specializing in child protective medicine are often the unfortunate target of emotionally driven and unsubstantiated criticism,” the statement read.
Pinsley argued that he did have the jurisdiction to investigate the issue because the county incurs costs from the potential misdiagnoses – such as foster care and litigation expenses. He said those costs are the focus of the report.
Report finds ‘systemic overdiagnosis’
Pinsley’s report found an “abnormally high number of medical child abuse diagnoses in the Northeast region of Pennsylvania,” particularly in Lehigh and Northampton counties.
“The reader must understand that our investigation did not reveal a few anomalies attributable to human error,” the report states. “Instead, our analysis showed statistical anomalies suggesting a pattern that requires further investigation.”
Pinsley’s report doesn’t mention any specific clinician or medical group, but there is only one medical group in the region that handles such cases: LVHN’s John Van Brakle Child Advocacy Center, or CAC.
"We have reviewed the facts and are comfortable with the county’s handling of these matters, and the protection of the children involved."Lehigh County Department of Human Services' prepared response
The Lehigh County Department of Human Services said in a prepared response that they are reviewing the report, but are "concerned that this appears to be rather one-sided in its presentation of facts and conclusions."
"While we are constrained by both state and federal law from fully discussing the situations of the specific Lehigh County cases identified by Mr. Pinsley, we have reviewed the facts and are comfortable with the county’s handling of these matters, and the protection of the children involved," the statement read.
'They made me sound like a monster'
Nineteen-year-old Willow Feeney and her younger sister, Hazel, were at the protest. They both have complex medical issues that are treated by specialists in Philadelphia, they said.
But when someone made a truancy report about Hazel in 2021, her mom, Stacy Feeney, was accused of medical child abuse because of the amount of medication they took and how many doctors they had seen.
Stacy Feeney said she tried to use medical documentation and letters from Hazel's doctors to defend herself.
"All of our specialists outside of this network were willing to testify and to talk to the courts and to talk to whoever they needed to. I had notes from every one of them," Stacy Feeney said. "I went to that emergency shelter care hearing not knowing the world that I had been thrown into, not knowing how things work."
"I had medical documentation, court records, school records, I had everything. Nobody looked at a thing. Nobody spoke to me. They made me sound like a monster at that emergency shelter care hearing."
Soon after, Willow Feeney was also taken into emergency custody.
"It was horrible, after knowing what had happened to my sister, and then knowing that the same thing was gonna happen to me — I was just, I was helpless," Willow Feeney said.
Willow Feeney said both she and her sister told the caseworkers that their conditions were real, and then they were both accused of having Muchausen's syndrome, a condition that causes a person to make up their symptoms.
"I don't want to have to do any of this. But it's such a horrible thing to happen that I'm trying to advocate for other families and other kids."Willow Feeney, daughter of a mom accused of medical child abuse
Hazel Feeney was in a kinship placement for 84 days and Willow Feeney was in a kinship placement for about 34 days.
Willow Feeney said a therapist made a child line report about their foster placements, but "it was never looked into."
Both sisters are now on the same medical treatments they were on before the accusations.
"I don't want to have to do any of this," Willow Feeney said, referring to the protest. "But it's such a horrible thing to happen that I'm trying to advocate for other families and other kids. It's an extremely traumatic situation for anyone to go through."
An expert's opinion
Marc Feldman, medical doctor and Clinical Professor of Psychiatry at the University of Alabama, has studied medical child abuse for 30 years.
Felman has written about false diagnoses of the disease, but he thinks they are rare. A study he conducted in 1999 found only about 2 to 3.5% of cases were misdiagnosed.
There have not been studies done on the issue since then, but he thinks the condition is likely underdiagnosed in many areas.
"I think demanding a second review when someone as skilled as Dr. Jenssen has performed a primary review, and the whole situation will be reviewed by the Family Court judge, is overkill."Marc Feldman, medical doctor and Clinical Professor of Psychiatry at the University of Alabama
Feldman emphasized that he did not know if that was the case in the Lehigh Valley. But he said he thought Pinsley's report was "one-sided" and that his recommendations would be difficult to implement.
"I think they're onerous and will have a chilling effect on child protection," Feldman said. "Now, they're not grossly unreasonable. They're not saying 'We don't believe that medical child abuse even occurs.' There is an acknowledgment of that."
"But I think demanding a second review when someone as skilled as Dr. Jenssen has performed a primary review, and the whole situation will be reviewed by the Family Court judge, is overkill."
Feldman said Jenssen is "nationally recognized" for her expertise in the field. Jenssen has practiced in multiple states and has had several lawsuits against her, but Feldman said even skilled child abuse pediatricians often face backlash.
In response, Pinsley said he didn't understand why asking for a second opinion would be onerous, since second opinions are recommended in many other medical cases.
"So you're going to take someone's child and a second opinion isn't recommended?" Pinsley said.
Feldman said he is a consulting expert in the court case featured in the Netflix documentary "Taking Care of Maya," on behalf of the hospital group that is facing allegations of misdiagnosing medical child abuse. He said the case is "far more complicated than the media... present."
EDITOR'S NOTE: Lehigh Valley Health Network is a financial supporter of Lehigh Valley Public Media and a founding supporter of LehighValleyNews.com. LVHN has no influence on our editorial or business operations.
