This article is a collaboration between The New Yorker and ProPublica.
In September, 2016, Jenn Thompson and her boyfriend, Robbie Ray, discovered that she was pregnant. They had met just over a month earlier, through the dating app Tinder, and quickly became inseparable. Robbie would stay at Jenn’s place several nights a week, and on the weekends they tailgated at football games. The pregnancy was unplanned, but both had recently turned thirty and were ready to start a family. When they went in for an ultrasound appointment, a technician pointed out two tiny circles on the screen: twins. They bought a baby Doppler and Robbie would hold the monitor on Jenn’s stomach so they could listen to the two hearts beating in tandem.
They got married five months later, at the Lutheran church Jenn attended. Robbie moved into her house, in Columbia, South Carolina, across the street from her parents in a tightly packed development of modest, newish homes tucked behind a shopping complex. They converted the second bedroom into a nursery. Jenn found the crib she slept in as an infant and gave it a fresh coat of paint. The babies arrived more than a week early, by C-section—a boy first, and then a girl.
Over Memorial Day weekend, when the twins were three weeks old, half a dozen excited family members came to Jenn and Robbie’s home and took turns cradling the twins. The girl seemed particularly fussy. At times, she cried so hard that she seemed unable to catch her breath. Robbie later called it a “scary cry.” But the couple figured she was just colicky. Then, the following Tuesday, as Jenn was feeding her, she noticed swelling and bruising on the baby’s right leg. She told me that she called Robbie, who was at work, driving a truck for a uniform-supply company, to tell him that something was wrong. Jenn’s mother came over and told her to take the baby to the pediatrician. The same doctor had examined the twins just a week earlier and found them to be in good health. This time, he told Jenn to take the infant to the emergency room at nearby Palmetto Health Children’s Hospital immediately.
An X-ray revealed that the baby’s leg was broken in two places, both near the ankle. The new parents said that nothing remarkable, no accidents, had occurred during the previous few days. Robbie wondered aloud if he had unintentionally hurt her while putting lotion on her legs or changing a diaper. Called in by the E.R. staff, Dr. Susan Lamb, a pediatrician specializing in child abuse, noted a pattern of bruising “consistent with an adult hand gripping the calf” and a fracture caused by “extreme” force, according to a South Carolina Department of Social Services report.
The hospital staff then examined the other twin. X-rays revealed a fracture in his left leg. A doctor found bruising on his back. The next day, as Jenn and Robbie sat with the twins at the hospital, social workers and security staff converged on the room. A sheriff’s deputy handed the couple an emergency order to take the twins into state custody.
Some among the medical staff and social workers involved in the case thought that Jenn reacted strangely to the discovery of her children’s injuries. She didn’t show emotion or seem bothered. Her affect was “flat,” according to the D.S.S. report. The hospital’s abuse specialist concluded the baby girl’s fractures were “diagnostic of physical abuse” and that the bruises were “inflicted.” D.S.S. concluded the boy’s injuries were also the result of abuse. A factor in this determination was that Robbie and Jenn did not have “a plausible explanation” for the injuries. “We had no idea,” Robbie told me later.
To find an explanation, the Rays said, they searched the Internet and eventually discovered a group called Fractured Families. The Web site was filled with stories of parents who were accused of abuse—falsely, it said—after their children were found to have bone injuries. Jenn told me that she was struck by how similar their experiences were to her own. Jenn made contact with several of the mothers in Fractured Families. They told her that there was a doctor in Boston who might be able to help her.
Michael Holick has a tenth-floor office at Boston University, where he is a professor at the medical school. His windows offer a view of the tree-canopied medical-school campus below. A makeshift system of plastic bags and buckets is rigged to collect the rain water that often leaks in. Gray tape binds the air duct, and the tiled floor is stained. Two lab coats hang in the corner and a stethoscope rests on a desk next to photographs of Holick’s wife and two adult children. Holick has worked in this space since he first arrived on campus, thirty years ago.
In the past seven years, Holick said, he has consulted or testified as an expert witness in more than three hundred child-abuse cases throughout the U.S., as well as the United Kingdom, New Zealand, Australia, Germany, and Canada. In almost every case, he has made the same finding: instead of blaming any injuries on abuse, he has diagnosed the child with a rare genetic disorder, hypermobile Ehlers-Danlos syndrome, a condition that affects the connective tissues of the skin, bones, and joints. A handful of studies on adults have linked EDS to bone fragility, and Holick argues that children with the disorder have weaker bones, which can fracture from normal handling. So far, his theory is not supported by the scientific literature, but Holick is convinced that “thousands, if not tens of thousands,” of parents worldwide have been falsely accused of fracturing their children’s bones. “It’s just terrible,” he told me. “I feel so sorry for these parents.”
In all the cases he has worked on, Holick has never concluded that a child was being abused. On the rare occasions when he didn’t diagnose EDS, he attributed the bone fractures to rickets or Vitamin D deficiency. Many geneticists and bone specialists find it troubling that he diagnoses EDS in nearly a hundred per cent of the cases he examines. According to the National Institutes of Health, EDS affects, at the most, 0.02 per cent of people worldwide. The rate at which Holick diagnoses the disorder “doesn’t fall into the mathematical probability of chance,” Brad Tinkle, a clinical geneticist at Peyton Manning Children’s Hospital, in Indianapolis, said. Holick retorts that his clients don’t come to him by chance; parents contact him after doing their own research and realizing that they or their children have symptoms of EDS. He adds that he hasn’t seen a single actual abuser pretending to have EDS and contacting him in search of a “get out of jail free” card.
Holick regularly diagnoses children with EDS without seeing them in person. “I already know on the phone they have EDS,” he said, adding that he questions the parents about potential symptoms. “I almost don’t have to ask. I know the answer.”
In 2008, a father named Kenneth Grad was indicted for felony assault and endangering children after X-rays of his infant son, taken at Akron Children’s Hospital, revealed twenty-six fractures of the fingers, arms, legs, ribs, and skull, according to court documents. Holick examined the baby's mother, Laura Grad, and diagnosed classic signs of hypermobility. Without examining the baby, Holick submitted an affidavit attributing the fractures to EDS. However, a test by the family’s pediatrician found that the baby did not have hypermobility. Grad was convicted in December, 2014, and a month later was sentenced to twenty-four years in prison. “The mom has EDS and so too likely the child,” Holick wrote in an e-mail, adding that, if the injuries weren’t due to bone fragility, “the amount of trauma to cause that number of fractures … would likely have resulted in the infant’s death.”
In 2017, Holick co-published an article about his EDS work in the little-known journal Dermato-Endocrinology, where he is an associate editor. In the study, Holick examined the cases of seventy-two children who the authorities believed had been abused. He diagnosed sixty-seven of them with EDS. In a third of the cases, he based his diagnosis on physical exams of relatives of the children, not the children themselves.
“How can you do that without an exam?” Brendan Lee, the chair of the Molecular and Human Genetics department at Baylor College of Medicine and the director of the Skeletal Dysplasia Clinic at Texas Children’s Hospital, said. He added that hypermobile EDS “is a diagnosis that is made based on a constellation of clinical findings, which you have to do by examination and history.”
Lee and several other experts said that hypermobile EDS typically cannot be diagnosed in children younger than five. Because infants are usually very flexible, they will likely score high on elements of the test given to older patients to determine hyper-flexibility, a key aspect of EDS. Also, symptoms of the condition do not usually manifest until later in childhood, or even adulthood. “I would not be comfortable, ever, telling a parent that an infant has [hypermobile] EDS,” Lee said.
There are four studies that Holick consistently cites to support his conclusions. I asked Rodney Grahame, the author of two of those studies and a former president of the British Society for Rheumatology, whether he finds Holick’s theory of a link between EDS and bone fractures in infants to be reasonable. “Not at all,” Grahame responded in an e-mail. “It may ‘stand to reason’, but it is not supported by published scientific research. In adults, other factors are at play including ageing and the menopause, alcohol, smoking which are factors associated with osteoporosis that are not present in infants.” Cristina Eller Vainicher, the lead author of another paper that Holick frequently cites, said that she can’t entirely discount his thesis, because some studies have suggested that a subset of EDS patients experience fragility fractures during childhood. Still, she wrote in an e-mail, “This does not mean that we could state all children with hypermobile EDS are at high risk of fractures.”
Dr. Michael Holick explains his theory about hypermobile EDS.
Holick’s credibility as an expert witness is buttressed by a formidable scientific résumé, mostly related to his work on Vitamin D. As a graduate student, at the University of Wisconsin, he discovered the active form of Vitamin D, which led to treatments for bone disease in kidney patients and for psoriasis. He later discovered that orange juice helps the body absorb Vitamin D, a finding that led to F.D.A. approval for Vitamin D-fortified orange juice. nasa tapped him to examine bone loss in space. When a mated pair of Komodo dragons at the National Zoo, in Washington, D.C., failed to produce a live hatchling, Holick determined that their glass enclosure was inhibiting Vitamin D production. The dragons soon procreated.
Holick, who is now seventy-two, gives talks around the world on the importance of Vitamin D. He was billed as a “legend” at the most recent annual meeting of the American Association of Clinical Endocrinologists. He has published more than five hundred articles in peer-reviewed journals and more than two hundred reviews and book chapters. Since 2011, other scientists have cited him almost a hundred and ten thousand times, making him one of the most frequently cited researchers in the world. He attributes his prolific output to his ability to function with minimal sleep. He has diagnosed himself with a sleep disorder that he said he shares with several notable figures throughout history, including Michelangelo. One day, when I visited him at his office, Holick said he had been there since two-thirty in the morning.
But Holick’s career has also been dogged by controversy. He came under fire for recommending the use of tanning beds based on research he’d done partly with funding from a foundation established by the Indoor Tanning Association, a relationship that I reported on in the Wall Street Journal. He also published a book called “The UV Advantage,” in which he urged people to soak up unfiltered sun two or three times a week. “Do not be afraid,” Holick wrote. “You are not going to die just because you go out in the sun.”
Soon after Holick’s book came out, Barbara Gilchrest, then the head of the dermatology department at Boston University, called Holick to her office to discuss it. The pair had previously collaborated on research, but now Gilchrest gave Holick two options: he could curb his sunshine proselytization or he could resign as a professor of dermatology, one of several positions he held at the medical school. Holick resigned. Gilchrest later publicly denounced his book as “shlock science.”
“He just went off the deep end and was a poster boy for the tanning industry,” she told me. Holick “ate up” the controversy, she said. “He loves being the provocative bad-boy character.”
Born in Jersey City, New Jersey, Holick knew from an early age that he wanted to be a scientist and a physician. His father, a machinist, and his mother, who worked part-time at a bakery, raised Holick and his four younger siblings. When Holick was five, the family moved to suburban Linden, New Jersey. He had an early fascination with dinosaurs, and “Jurassic Park” posters hang on his office wall. When he was in the third grade, his father bought him a chemistry set, putting him on a path to an undergraduate degree in chemistry from Seton Hall University.
Almost seven years ago, a couple from New Hampshire called Holick. They were seeking an expert in bone disease to figure out why their son at seven months old had suffered fractured bones in both arms from no apparent traumatic cause. Doctors believed that the fractures were caused by abuse, and social services had removed the boy from the home. Holick invited the parents to his clinic. When he shook the mother’s hand, Holick recalled, he knew immediately what was going on.
There are thirteen types of Ehlers-Danlos syndrome. The most common, and generally considered the least severe, is hypermobile EDS. The most remarkable feature of hypermobile EDS is joints that extend far beyond the normal range. Some people with the condition have made a living as side-show contortionists, using stage names like Elastic Skin Man and the Human Pretzel. That extreme flexibility can also be an advantage in sports like gymnastics and swimming, though the syndrome also makes it easy for joints to dislocate and for skin to bruise.
What Holick noted when he shook the mother’s hand was that her skin was doughy and her joints were flexible—both classic signs of Ehlers-Danlos. He evaluated the baby and found that he also had flexible joints and doughy skin. Far from being abused, Holick concluded, the injured boy had EDS, and this condition predisposed him to weak bones that could fracture from normal handling.
“It seems so intuitively obvious,” he told me. “No one ever connected the dots. No one in the pediatric or child-abuse community ever made an effort to find other potential mitigating circumstances to explain these fractures, other than a rush to judgment.”
He testified in court on the family’s behalf, and the baby was returned to his parents. Word of Holick’s success began to spread. He now receives pleas for help from parents accused of abuse on almost a daily basis. Holick said he doesn’t charge for his services, though he does solicit donations for his Ehlers-Danlos research. About a quarter of the funding for his EDS research in the past four years—about a hundred and twenty-five thousand dollars—has come from two families who had abuse charges dropped after Holick intervened in their cases, he said.
Holick is one of the most prominent and sought-after expert witnesses for the defense in child-abuse cases. He told me that about half the parents he assists end up with a positive outcome, such as getting their children back or having abuse charges dismissed. However, he has sometimes claimed a much higher success rate. “Before I started testifying in these court cases on behalf of the family 100% of these cases had been won by the prosecution,” he wrote as part of an unsuccessful plea to the editor of a medical journal to publish his study on EDS and child abuse. “Now that I am testifying on behalf of the family 90% of the cases have been won by the parents and their children have been returned to them without further incident.”
Jenn Ray talked to Holick on July 11, 2017, about six weeks after the state removed the twins from their home. In September, Jenn and Robbie, along with the twins and Jenn’s aunt, who had custody of the children, travelled to Boston to be evaluated at Holick’s clinic. (Jenn and Robbie were allowed to be with the twins as long as the aunt was present.)
Holick noted that Robbie’s skin had a doughy feel and his joints were extremely flexible—he could touch the floor with the palms of his hands without bending his knees. Jenn had a history of bruising easily and feeling lightheaded when she stood up quickly. These were all symptoms of hypermobile EDS. Holick diagnosed them both with the condition.
If one parent has hypermobile EDS, the chances of a child inheriting it are fifty per cent. If both have it, the odds increase to seventy-five per cent. Holick determined, with “a high degree of medical certainty,” as he wrote in a report, that the twins had the condition, too, and that their fractures could have been caused by bone fragility associated with EDS.
“It was a relief,” Robbie told me. Jenn finished his thought. “You are so lost and you’re alone,” she said.
While state social-services officials believed that the injuries were the result of abuse, they could not identify a perpetrator among the people who came in contact with the twins that Memorial Day weekend. Officials did file a neglect charge against the Rays, accusing them of failing to seek prompt medical care for their daughter. The charge, if substantiated by a judge, could have prevented the Rays from regaining custody. A guardian ad litem, assigned by the court to represent the interests of the twins, recommended that the family be reunited. The guardian wrote that she had “witnessed the smile” the children gave when Jenn and Robbie entered the room. The twins’ pediatrician, the guardian reported, did “not see any red flags that would suggest Jennifer or Robbie had anything to do with this.” Finally, the guardian cited Holick’s finding that the children had symptoms of EDS.
Last December, the Rays accepted a deal with the state that approved the return of the children if the couple successfully completed counselling. Even before the counselling was finished, the state allowed the twins to come home for unsupervised weekend visits, starting at Christmas, as the first step toward a permanent reunion.
A 2008 article in the journal Pediatrics looked at some of the nearly forty-three thousand fractures in children under three in the years 1997, 2000, and 2003. Of those cases, the authors found that about one in eight was diagnosed as resulting from child abuse. That proportion doubled, to one in four, for babies who were less than a year old. Doctors say one reason for the difference is that children under a year aren’t walking yet, so they don’t fall on their own or run into things.
Researchers first linked certain types of fractures to child abuse in the nineteen-fifties. Since then, the methods for distinguishing accidental injuries from those caused by abuse have become more sophisticated, but there is no test or evaluation that can definitively determine whether a fracture is the result of child abuse.
Fracture cases are often contentious. Many of the children involved are too young to describe what happened to them, and there are usually no witnesses. There are also conditions known to mimic child-abuse injuries. Osteogenesis imperfecta, for instance, often called brittle-bone disease, is widely accepted to cause fractures in babies and infants from normal handling. Unlike with hypermobile EDS, there is a genetic test for brittle-bone disease, and many children’s hospitals routinely check for it in potential abuse cases. It is extremely rare.
The easiest cases to diagnose as child abuse are the most brutal—those with devastating, widespread injuries. The truth is harder to discern when seemingly caring parents bring a child to the doctor for a different ailment and, upon being confronted with evidence of fractures, are at a loss to explain them. A sizeable chunk of Holick’s cases fall into this category.
The parents who reach out to Holick have usually contacted other doctors for help, with no success. Often, they have been scorned by child-welfare officials and prosecutors who believe that abuse caused their children’s injuries. They come to Holick looking for a miracle, and when he answers their prayers they react with unabashed gratitude.
“I truly believe you could be an angel put on this earth to show the justice and glory of the almighty,” a father from New Hampshire wrote to Holick, in 2016. “The good you’re doing on this earth is amazing, incredible, inspiring, loving, noble, and even incomprehensible.”
The father had been charged with abuse after his four-month-old son suffered a broken arm. He said he had simply turned the boy over in the crib, and the baby wiggled and fell a short distance onto the crib mattress. The father heard a crack and the baby stopped moving his left arm. State circuit-court judge Susan Carbon initially considered it an unusual injury for a short fall onto a padded surface. “The question is whether the injury was intentional and whether there was more behind the explanation of the fall,” she wrote.
Holick examined the parents and the boy and concluded that they all had EDS. It “could easily explain” the fracture, Holick wrote. He then took the stand and awed the judge. She called his hundred-and-twenty-seven-page résumé “nothing short of stunning.” The analysis by the state’s medical experts “pales in comparison to Dr. Holick’s detailed explanation,” she wrote.
“In Dr. Holick’s opinion, an infant with these conditions can easily sustain a fracture with ‘normal handling.’ [The child’s] skeletal structure, in Dr. Holick's view, is extremely fragile. Dr. Holick has seen numerous instances where lesser-trained persons interpreted injuries such as that sustained by [the child] as abuse when, ‘with a very high degree of medical certainty,’ they resulted from EDS, not intentional abuse.” She dismissed the charges against the father.
Holick’s legal victories have attracted widespread favorable publicity; ABC’s “20/20” and numerous local news outlets have trumpeted Holick’s expertise. One of his cases was featured on an episode of “Diagnose Me,” on the Discovery Life cable network. In a reënactment scene, an actor playing Holick tells a tearful mother that he has figured out why her child suffered broken bones. “You have Ehlers-Danlos syndrome,” Holick’s character says. “It’s a very rare disease, and in kids it’s often mistaken for child abuse. I have testified about this before, and I would be happy to do it again for you.”
Like the Rays, many families find Holick through Fractured Families, a nonprofit organization founded by a group of five mothers whose children once had injuries that led to suspicions of abuse. Holick had worked with four of the five, and his intervention was critical in exonerating two of them.
Holick said he is careful to note in his expert reports that he doesn’t know the families he evaluates and is only offering a medical perspective. Still, his tone is hardly neutral. In three recent reports, he referred to the mothers as “delightful.” In an e-mail discussing his testimony in a case in Alabama, Holick told a defense lawyer that he was “hopeful that this lovely family will be reunited as soon as possible.”
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