STORY: "The Child Abuse Contrarian" by David Armstrong published by The New Yorker on September 26, 2018. (David Armstrong is a senior reporter at ProPublica and an adjunct professor of journalism at Boston University...This article is a collaboration between The New Yorker and ProPublica);
SUB-HEADING: "Michael
Holick, a renowned scientist turned expert witness, relies on his own
controversial theory to help alleged abusers avoid prison and regain
custody of the babies they were accused of harming."
GIST: "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.” Holick
does not hide his disdain for the child-protection system, nor his
belief that the parents he works with are innocent. In the four months I
corresponded with Holick, he frequently forwarded me e-mails from
parents accused of abuse. He wrote atop one such message, “Does this
sound like a mother who is abusing and neglecting her child?” In
June, a mother from the United Kingdom whose son had twenty-two rib
fractures contacted Holick. The only detail of medical history she
offered was that she found out after her pregnancy that she had been
Vitamin D deficient. “It is certainly possible that the fractures were
due to infantile rickets and vitamin D deficiency,” Holick responded.
“It’s also possible that he may have had a genetic disorder that
predisposes him to having fractures. It’s known as Ehlers Danlos
syndrome.” The
mutual enmity between Holick and abuse experts at children’s hospitals
is hard to overstate. Lori Frasier, the head of the Division of Child
Abuse Pediatrics at Penn State Hershey Medical Center, started
encountering Holick in court several years ago. Frasier told me that she
was struck by Holick’s arrogance. “Maybe he is feeling like he is
really, really smart and seeing something the rest of us can’t see,” she
said. He might view himself as “a Copernicus of this century, or
Galileo, fighting the status quo.” Holick describes specialists
like Frasier as zealots who, because of their training, see abuse behind
nearly every mysterious injury that comes through the hospital door. “I
naïvely assumed people want to be educated,” Holick said. “They don’t.
They are child-abuse experts. They have to know.” Unlike Holick,
Frasier serves as an expert witness for both prosecutors and defendants,
and recently testified in Nevada for a father accused of child abuse.
(The father was acquitted in the case.) She also said that she and her
team diagnose abuse in only about forty per cent of the cases they
consult on. “We see everything,” she said. “We see mistakes in both
directions.” In May, 2016, Holick appeared on a Philadelphia
television station, saying that a baby’s injuries were likely the result
of EDS and a Vitamin D deficiency, not child abuse. Two days later,
Frasier sent a concerned e-mail to Karen Antman, the dean of Boston
University Medical School. “Dr. Holick makes statements regarding the
infant’s medical condition that have no evidence base,” she wrote,
noting that other experts had ruled out EDS in the case, and that even
if the boy did have the condition there was no evidence it would make
his bones fragile. “He is bringing the reputation of Boston University
into disrepute.” Antman replied with a defense of Holick and said
she didn’t need to know the particulars of his expert work. “As a
private citizen and a physician, Dr. Holick is entitled to provide
consultative services and testify as an expert witness,” she wrote. “As a
member of the Boston University School of Medicine faculty, academic
freedom allows Dr. Holick to espouse his views without censorship from
the University.” Antman declined an
interview request for this article but indicated through a spokesperson
that she stands by the views she expressed in her e-mail.