Agent Children Public

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The Children of Agent Orange
For decades, Vietnam veterans have suspected that the defoliant harmed their children. But the VA hasn’t studied its own data for clues.
A new ProPublica analysis has found that the odds of having a child born with birth defects were more than a third higher for veterans exposed to Agent Orange than for those who weren’t.
by Charles Ornstein and Hannah Fresques, ProPublica, and Mike Hixenbaugh for The Virginian-Pilot December 16, 2016 This story was co-published with The Virginian-Pilot.
Army veteran William Penner used to jokingly call the thick yellow crust that crept across his young son Matthew’s scalp “Agent Orange” after the toxic defoliant sprayed on him in Vietnam before the boy was born. The joke turned sour a few years ago, when Matthew, now 43, was diagnosed with a host of serious illnesses, including heart disease, fibromyalgia and arthritis.
As part of our Reliving Agent Orange series, ProPublica and The Virginian-Pilot have been recording the voices of those impacted by the herbicide, which contained the toxic chemical dioxin. Watch the videos.
Using data from the VA’s Agent Orange Registry, we analyzed the relationship between Agent Orange and birth defects. Read more.
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Similar worries struck vet Mike Blackledge when staffers at a local Veterans Affairs hospital suggested his children’s diseases could be linked to his time in Vietnam. His son has inflammatory bowel disease so advanced he wears a pouch to collect his waste, and his youngest daughter has neuropathy, spinal problems and gastrointestinal issues. His oldest daughter — the one born before he went to fight in Vietnam — is fine.
They, like thousands of others, are grappling with a chilling prospect: Could Agent Orange, the herbicide linked to health problems in Vietnam veterans, have also harmed their children?
For decades, the Department of Veterans Affairs has collected — and ignored — reams of information that could have helped answer that question, an investigation by ProPublica and The Virginian-Pilot has found.
Its medical staff has physically examined more than 668,000 Vietnam veterans possibly exposed to Agent Orange, documenting health conditions and noting when and where they served. For at least 34 years, the agency also has asked questions about their children’s birth defects, before and after the war.
But the birth defect data had never received scrutiny by the VA or anyone else until this year, when ProPublica, working with The Virginian-Pilot, obtained it after submitting a detailed plan describing how it would be used and agreeing to protect patients’ identities.
The analysis that followed was revealing: The odds of having a child born with birth defects during or after the war were more than a third higher for veterans who say they handled, sprayed or were directly sprayed with Agent Orange than for veterans who say they weren’t exposed or weren’t sure. The analysis controlled for such variables as age and health status.
The data has some caveats. The VA, for example, had no way of verifying the vets’ Agent Orange exposure and did not independently confirm information about their children’s birth defects. Even so, experts said the results should prompt the VA to take the issue seriously.
“It’s like a sign that says ‘Dig Here’ and they’re not digging,” said Dr. David Ozonoff, a professor of environmental health at Boston University and co-editor-in-chief of the online journal Environmental Health, after reviewing ProPublica’s findings. “It raises questions about whether they want to know the answer or are just hoping the problem will naturally go away as the veterans die off.”
Joel Michalek, co-author of a major Air Force study into Agent Orange exposure and birth defects, said ProPublica’s analysis suggests the issue should be revisited. In the 1980s, he and his team found a higher rate of post-war birth defects in the children of veterans who handled Agent Orange than in the children of those who didn’t, but they later concluded that herbicide exposure was not the cause.
“You see parallel patterns of what we saw back then,” said Michalek, a professor of epidemiology and biostatistics at the University of Texas Health Science Center at San Antonio. “That, to me, is a signal.”
In a written response on Thursday, the VA called ProPublica’s findings “interesting” and “a step in the right direction,” saying they raise additional questions.
But the agency also said it does not have the in-house expertise to study birth defects, deferring to academic researchers and other parts of the federal government. “VA believes that research to understand the relationship between exposure and intergenerational transmission of disease, if conducted, should be done where scientists with expertise in the relevant fields of inquiry can provide leadership.”
The VA said it should play “an ancillary role.”
Concerns that Agent Orange was not just sickening vets but also causing birth defects in their children surfaced after troops returned from war four decades ago. Veterans reported that some of their children had unusual defects — missing limbs, extra limbs and other diseases — that didn’t run in their families. Some government studies were done, including Michalek’s, but they generally dismissed an association.
Since then, those findings have guided the government position on disability benefits for children of Vietnam vets. The VA makes payments only to those who have spina bifida, in which the spinal cord doesn’t develop properly, and the children of a small number of female Vietnam vets with 18 other diseases. That leaves out the vast majority of vets’ ailing children.
Last week, after repeated recommendations by federal scientific advisory panels, Congress passed a bill that requires the VA to pay for an analysis of all research done thus far on the “descendents of veterans with toxic exposure.” It also requires the agency to determine the feasibility of future research and, if such studies are possible, to pursue them.
In its written response, the VA said it has already requested a related report from the National Academy of Medicine.
Recent advances in science, especially in the burgeoning field of epigenetics, have shown that chemical exposure can affect multiple generations. Changes in gene expression — whether a gene for a trait is turned on or off — can be passed from one generation to the next, research shows. A 2012 study, for example, showed that gestating female rats exposed to dioxin, a byproduct found in Agent Orange, passed mutations to future generations.
“I think there’s kind of a paradigm shift that’s been going on,” said Linda Birnbaum, director of the National Institute for Environmental Health Sciences, part of the National Institutes of Health. “While I used to be pretty skeptical about reports, especially related to Agent Orange exposures of predominantly male soldiers we had at the time, I’m not as skeptical as I was.”
If researchers conclude that troops’ wartime exposures can affect future generations, the implications go well beyond Vietnam veterans and their descendants. Vets from subsequent conflicts have similar concerns that their proximity to burn pits, depleted uranium and other toxins might be affecting their children.
Vietnam vets and their advocates believe a brutal calculation may lie at the heart of why their claims have gone unexamined. Caring for and compensating veterans themselves already costs tens of billions of dollars a year. If a link to their children is proven, it could add billions more.
Many Vietnam veterans, reaching the ends of their lives, are increasingly haunted by thoughts of the full cost of their service.
Blackledge, who fathered a healthy child before the war and two sick ones after, believes the government that exposed troops to Agent Orange should care for those it harmed — including their children.
“I probably wouldn’t have had kids,” he said, “had I known that there would be an impact on them.”
Mike Ryan, an Army vet, recalled seeing planes spraying Agent Orange overhead during his 13-month Vietnam tour but thought little of it until 1976, when his wife, Maureen, made the connection between the toxic herbicide and their daughter, Kerry.
From 1962 to 1971, the U.S. military sprayed millions of gallons of potent weed killers, including Agent Orange, over Vietnam to kill dense jungle foliage and eliminate places for the enemy to hide, exposing as many as 2.6 million service members in the process.
Many, like Ryan, returned home, eager to put Vietnam behind them, starting new families or adding to ones they had. Kerry was born in 1971 with a hole in her heart, no lower digestive system, dysfunctional kidneys, a deformed arm and fingers, spina bifida and more than a dozen other health problems.
Mike Ryan’s mother, the head obstetrician at a Long Island hospital, delivered baby Kerry and knew immediately something was terribly wrong.
“Can you imagine the trauma of it?” he said. “Seeing your new granddaughter come out like that?”
For years, the Ryans were baffled by their daughter’s problems. There had been no history of birth defects on either side of the family. Neither were smokers or drug users. A second child, born a few years later, was relatively healthy. It wasn’t until Maureen Ryan read a magazine article that suggested a link between dioxin and birth defects that it dawned on them that her husband’s tour in Vietnam might be connected to Kerry’s problems.
By that time, there had been reports suggesting that Vietnamese children born in areas heavily contaminated by Agent Orange had high rates of defects, though some U.S. researchers said rigorous scientific studies never established a link.
Mike Ryan also had an ugly rash, called chloracne, that’s considered a signature effect of Agent Orange exposure. He remembered drinking rainwater collected from the tops of tents in Vietnam, not realizing it may have been contaminated with chemicals sprayed from above.
The Ryans went public with their concerns at a press conference in 1978, drawing the nation’s attention to the children of Vietnam veterans.
A year later, the Ryans pushed Kerry into a congressional hearing in a wheelchair to testify about her struggles, prompting then Rep. Al Gore, D-Tennessee, to ask, “I wonder what the reaction of the VA would be if the enemy had used Agent Orange?” In the fall of 1980, President-elect Ronald Reagan arranged a meeting to learn about their struggle and concerns about the herbicide.
Instead, in the years that followed, the Reagan administration worked to undermine the Ryans’ cause in court as the couple served as one of the lead plaintiffs in a class-action lawsuit against the chemical companies that made Agent Orange.
When the lawsuit settled in 1984 for $180 million, U.S. District Judge Jack Weinstein ruled that direct payments could only be made to disabled veterans or survivors of those who’d died, cutting off children like Kerry.
Weinstein, who’d expressed doubt that veterans had been harmed, was even more skeptical about their children, writing, “however slight the suggestion of a causal connection between the veterans’ medical problems and Agent Orange exposure, even less evidence supports the existence of an association between birth defects … and exposure of the father to Agent Orange.”
Mike Ryan wasn’t surprised. “I knew we had no shot,” he said.
In 1997, when the VA finally began offering compensation for children with spina bifida, the Ryans didn’t bother applying. Mike Ryan said it was never about the money; it was about recognition of the debt he believes his country owes his daughter. “She has 22 birth defects, and they want to pay only for spina bifida? Come on, give me a break.”
Mike Ryan, now 71, said he hadn’t kept up with scientific advancements that potentially confirm what he’s spent years arguing — that a father’s exposure to toxins can cause health problems in offspring. In the end, it won’t matter what researchers discover, he insisted.
“They will never admit it,” he said, “because if they do, then America is admitting to drafting the unborn.”
The same year Weinstein cited a lack of evidence connecting Agent Orange and birth defects, an Air Force scientist believed he’d found some.
In 1979, a team of researchers had embarked on a $143 million, 20-year study of those Air Force vets who’d had the greatest exposure to Agent Orange: Those who’d sprayed it. The study was extremely detailed, verifying what veterans said with a host of medical exams and biological specimens, including blood, semen and urine samples. Five years in, Dr. Richard Albanese, a lead investigator, and his team made what they considered an intriguing finding — children born to exposed Air Force vets after the war had more defects than children of those who hadn’t handled Agent Orange.
The researchers wrote up the results in a report, but their superiors halted its release, saying more research was needed, including physically examining all the children to verify whether they had birth defects, Albanese recalled in a recent interview. After Albanese spoke up about the delay, he was taken off the project and reassigned.
Meanwhile, two major studies from the Centers for Disease Control and Prevention concluded that there was little connection between exposure to herbicides and birth defects. One examined babies born in the metropolitan Atlanta region and found that Vietnam veterans fathered a similar percent of babies with birth defects as other men. A second study compared the rates of birth defects among babies fathered by Vietnam vets to those born to veterans who served elsewhere during the war. Vietnam veterans reported a higher rate of birth defects in their children but that finding was not validated in follow-up reviews of hospital records. The reports did suggest a possible association between herbicide exposure among vets and spina bifida in their kids.
Finally in 1988, under pressure from members of Congress, the study Albanese had worked on was released, but with only his name on it. His study found “a statistically significant increase in reported birth defects” among veterans who handled Agent Orange. Then, four years later, the Air Force published a follow-up paper that claimed no evidence had been found linking Agent Orange exposure to birth defects in the men’s children.
The 1992 report looked at the data in a different way. If there indeed was an association, the researchers wrote, they would have expected to find that veterans with more dioxin lingering in their blood would have higher rates of birth defects in their children, but that wasn’t the case. They concluded that the few links between dioxin and birth defects “were generally weak, inconsistent or biologically implausible” and the data “provided no support” for such a connection.
To this day, Albanese believes his findings were correct while those of his former colleagues were flawed.
“These people really bent over backwards to try to disprove a connection,” he said. “That’s my feeling.”
Albanese, who now runs a small defense consulting company in San Antonio, said he believes the episode was part of a broader government effort to suppress findings connecting Agent Orange to the health of veterans and their children.
“I’m so sad and so angry that science could be corrupted this way,” said Albanese, who served in the Air Force. “I’m a faithful military man, but this was not honorable behavior.”
Seven years later, some of Albanese’s concerns were investigated by the Government Accountability Office and at a congressional hearing in 2000. The GAO noted the unusual way in which the Air Force report was handled and said one veterans’ organization believed it may have delayed the VA’s decision to provide benefits to children with spina bifida.
Air Force researchers have denied that their findings were manipulated and said they needed the extra time to verify each birth defect against medical records to ensure it was correct.
Meanwhile, thousands of Vietnam vets have added information every year to the VA’s growing body of data, deepening a potentially rich pool for researchers. Yet, for decades, nobody looked.
By 1978, Agent Orange and its potential effects had become a national controversy. In response, the VA began offering veterans free examinations and regular notifications when new information about Agent Orange came to light. As part of the effort, information was gathered about each vet and entered into a newly established Agent Orange Registry.
The questionnaire collected detailed information about veterans’ service, health conditions and possible exposure to herbicides, asking vets whether they handled or sprayed Agent Orange, were directly sprayed with it, were in an area recently sprayed with it, ate or drank food that may have come in contact with it, or were exposed to other herbicides. The VA also collected information about children born before and after the vet’s service with spina bifida or other birth defects.
The questionnaire didn’t define what constitutes a birth defect, leaving it to each vet to do so. In an email last month, the VA said it “would expect” parents to accurately answer questions about whether their children have birth defects, since such defects affect about 3 percent of all births. Yet in its statement on Thursday, the agency said that it anticipated “significant variation in the accuracy” of the self-reported information.
ProPublica looked for differences in birth defect rates among children of veterans who said they were exposed to Agent Orange compared to those who said they weren’t or weren’t sure. The analysis focused on a group of 37,535 veterans who had children born before their service in the war as well as during or after, in part because many of the factors relevant to birth defects wouldn’t change, including the veterans’ genetic makeup.
A veteran was considered exposed if he answered “definitely yes” to the questions about handling or spraying Agent Orange or being directly sprayed with it. Fewer than 10 percent of veterans fit this criteria. If a veteran said he was unsure or definitely was not exposed, he was considered unexposed.
The analysis showed that both groups saw a substantial increase in birth defects among their children born after the war, but the rate was higher for those who were exposed. Slightly more than 13 percent of veterans who sprayed, handled or were sprayed with Agent Orange reported having a child with birth defects born during or after the war, compared to nearly 10 percent of veterans who were not exposed or were unsure. The two groups had similar rates of birth defects among children born before the war, but the odds of having a child born durin
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Agent Children Public