In the decade since "child abuse pediatrician" became a board-certified subspecialty, the field has seen its share of controversy. Justina Pelletier was taken from her parents and institutionalized in 2013 after a child abuse pediatrician at Boston Children's Hospital didn't believe the original diagnosis of mitochondrial disease -- only to be returned to her parents after 16 months in state custody. In 2015, a massive Washington Post investigation questioned the accuracy of the "Shaken Baby" diagnosis, a key tool in the specialty's armamentarium. And last month, a multi-part series by NBC News and the Houston Chronicle has brought attention to several cases of innocent parents who fought long battles to win their children back after they were accused by child abuse pediatricians at Texas Children's Hospital. Critics have levied charges of abuse of power, and of potential bias when these doctors are paid by state child protection agencies. Some have even questioned whether the specialty has adequate training to make such life-altering calls. Today, 350 child abuse pediatricians are certified in the U.S., and MedPage Today spoke with several of the subspecialty's founders and leaders. Their work requires thick skin -- showing up in court, dealing with angry parents -- and they maintain that they do what they do strictly to better the lives of children. "We take no pleasure in diagnosing a kid who's been abused," Howard Dubowitz, MD, director of the Center for Families at the University of Maryland, who has been working in the field since the 1980s, before it was an official subspecialty, told MedPage Today. "We are very aware of the enormous consequences. We apply due diligence to carefully consider all the possibilities involved and we don't rush to conclusions." "That said, mistakes can be made," Dubowitz said. Subspecialty Origins In the early 2000s, pediatricians who were already working in the child abuse arena met in Philadelphia to crystallize their efforts, which resulted in the formation of a professional society, the Helfer Society, in 2004. It was named for Ray Helfer, MD, a pediatrician who had been highly influential in the field. Two years later, these doctors submitted an application for the subspecialty to the American Board of Pediatrics. Desmond Runyan, MD, DrPH, who recently retired as executive director of the Kempe Center for the Prevention and Treatment of Child Abuse and Neglect at the University of Colorado, shepherded an application through the process of formal recognition, and the first class of child abuse pediatricians passed their board exam in 2009. However, the field had been around in less defined terms as far back as the late 1950s, according to Richard Krugman, MD, professor of pediatrics at the Kempe Center in Colorado. According to Krugman, three centers led the way in helping physicians recognize, treat, and prevent child abuse at that time: Colorado General Hospital and the children's hospitals of Pittsburgh and Philadelphia. Then in 1962, Henry Kempe, MD, wrote a Journal of the American Medical Association paper that would define the field for years to come, titled "The Battered Child Syndrome." Colorado's child abuse institute is named after him. After that paper, more interdisciplinary child abuse consult teams formed in pediatric hospitals, according to Eli Newberger, MD, who is now retired but was instrumental in setting up Boston Children's Hospital's child abuse program in the 1970s. Those teams integrated the efforts of social workers, psychologists, psychiatrists, nurses, child development specialists, and others, Newberger said. Teams continued to evolve throughout the 1980s, followed by two key reports in quick succession: one from the U.S. Advisory Board on Child Abuse and Neglect in 1990, and another from the Institute of Medicine in 1993, titled Understanding Child Abuse and Neglect, and experts in the field rode that momentum to the eventual creation of a subspecialty. To become certified, child abuse pediatricians must complete an accredited fellowship that includes training in injury mechanisms, radiology, and orthopedics; working with outside investigators and attorneys; testifying in court; working on multidisciplinary teams, and delivering evidence-based treatments in child psychology, according to Suzanne Haney, MD, a child abuse pediatrician at the University of Nebraska, who chairs the American Academy of Pediatrics' Council on Child Abuse and Neglect. It's a relatively small community, so the leadership knows each other well, with some of the most prominent centers being Kempe in Denver, Children's Hospital of Philadelphia, the University of Washington, New York University, the University of Florida, the University of Oklahoma, the University of North Carolina, and Children's Hospital Los Angeles. Their prominence and dedication to the subspecialty is usually defined by a key leader, like Carole Jenny, MD, MBA, in Seattle, Robert Block, MD, in Oklahoma, or Vincent Palusci, MD, in New York. 'Prosecution and Punishment' Yet Newberger says he's disheartened by the way the field has evolved. When he was active in the field, "it wasn't simply about the injuries and the traumatic vectors that might have caused them, which is very much the focus today of child abuse pediatricians. Rather, it was about the stresses in the family and how those might be addressed in a helpful way," he told MedPage Today. Now, he says, "prosecution and punishment, rather than understanding and help, have become woven into child protection work." Physicians are focused on diagnosing abuse, rather than looking at the bigger picture, he said. For instance, training in psychology, to get a better understanding of possible motivations of the parent, is lacking, he said. While the diagnosis of "Munchausen syndrome by proxy" has fallen out of favor, it's been replaced by "medical child abuse," scrutinizing parents who bring their child in for frequent treatments. But there can be legitimate explanations driving persistent parents, including the possibility of hypersensitive or hypervigilant behavior if a parent experienced a traumatic event having to do with the child, such as premature birth, Newberger said. Additionally, child abuse pediatricians aren't experts in rare diseases, which can go undiagnosed for years. That was the case for Justina Pelletier, whose doctors at Tufts University were treating her for mitochondrial disease. When they referred her to Children's Hospital Boston for her gastrointestinal issues, the child abuse pediatrician there, Alice Newton, MD, suspected her condition was purely psychological, leading to her institutionalization, where she became sicker. The National Organization for Rare Disorders created a page on medical child abuse a few years ago to provide some resources to the families who may be facing such accusations, as have smaller rare disease groups, including those that represent eosinophilic disorders and mitochondrial disease. Funding for these experts has also been called into question. The NBC News and Houston Chronicle piece cited the example of how the majority of one child abuse pediatrician's salary was funded by the state agency that oversees Child Protective Services. Maxine Eichner, a law professor at the University of North Carolina, Chapel Hill, who has studied child abuse pediatricians and has been involved in about three dozen cases against parents in the last 4 years, said funding models and leadership vary from program to program -- and that has a noticeable effect on the number and type of accusations. "There are particular places that give rise to the medical child abuse diagnosis," Eichner said. "Some of it depends on the child abuse pediatrician and where they are. North Carolina, the program I've had the most contact with, is not at all a hot spot." Part of that, she said, has to do with the fact that one of its lead child abuse pediatricians is a mitochondrial disease expert. Focus on the Child When Haney was asked about whether child abuse pediatricians receive adequate training in child and adult psychology, she said, "we're not diagnosing a perpetrator. It's more about diagnosing a child with injuries that are abuse." She added that physicians receive training in trauma and its effect on children and families. Her team doesn't get direct funding from Nebraska's child protective services, but the agency will ask her team to review cases, she said. Even when her team does consult, "there is no expectation for diagnosing abuse," Haney told MedPage Today. "It's not like your funding will be dropped if you don't diagnose abuse." Regardless of whether it's the hospital staff or the state protective services that refers a case, "what's not mentioned is how many cases come across our desks that we don't diagnose as abuse," she added. Dubowitz said media-savvy defense lawyers and "grandstanding physicians" serving as expert witnesses are to blame for the increased scrutiny on his profession. "These are folks with fancy titles at good institutions who testify in these trials on behalf of the defense quite often, coming up with theories that have not been scientifically proven, and have not gone through the usual peer review process," Dubowitz said. "They can persuade a jury or judge there's at least a reasonable doubt, and as you know in a criminal trial, that's all you need to sow and the case can get thrown out or the defendant can get off." Though Dubowitz wouldn't mention these experts by name, a ProPublica report from last year focused on Michael Holick, MD, who is best known for his advocacy around vitamin D but now testifies on behalf of parents who believe they were wrongly accused of child abuse. Rather than blaming injuries on abuse, he's often diagnosed children with Hypermobile Ehlers-Danlos syndrome, which makes them susceptible to fracture, and parents have been acquitted. "In our court system, the reasons why someone is acquitted may not have anything to do with whether they committed the crime or not," Haney said. "Maybe there's a reasonable doubt, but that doesn't mean it didn't happen." Krugman at the Kempe Center said those court decisions need to be studied in greater detail, in order to improve the work of child abuse pediatricians. The field has long suffered from inadequate research, the result of sparse funding from the National Institutes of Health, he said. "What worries me about the field is that I don't see a lot of learning from mistakes," he said. "In any clinical profession, you have to be prepared to acknowledge that you make mistakes, and learn from them so you don't make them again." Newberger acknowledged those challenges, and still has a soft spot for the field that he played such a key role in shaping in those early days. "Blessings on the people who choose to do this work," Newberger said. "Most pediatricians don't want to get involved with these vexing family problems that may haul them into court to give testimony and have their credibility undermined by a defense attorney." "Doing this work is not for the faint of heart," he added. "So many of them begin with the best intentions, but they feel they're confined by the subspecialty." Source
