Remembering the Children of Agent Orange: Generations of Loss
Agent Orange took my father, and quite likely took my sisters. My story is frighteningly common. Part 2 in a series.
In the first part of this series, I chronicled my father’s exposure to Agent Orange as an Army nurse in Vietnam, which would cost him his health. In this part, I focus on the catastrophic health struggles of the children of countless other veterans.
Part 1: A Personal Investigation
Part 2: Generations of Loss
Part 3: How Dioxin Damages Generation After Generation
Part 4: What Remains
Many Vietnam vets and their children tell strikingly similar stories. Everything was fine with the kids conceived before Vietnam. But the children conceived afterward were plagued with unusual health conditions that previously did not exist in their families. A private group that I’ve recently discovered, run by the Children of Vietnam Veterans Health Alliance (COVVHA), has more than 5,000 members on Facebook. A common way many people join the group is with a post cataloguing their family’s mysterious ailments that ends with something to the effect of “Am I alone?”
One member of COVVHA is Lori Weber, 44, of Canton, Michigan, outside Detroit. Her father, Donald Schoenemann, 73, served in Vietnam in 1967 as a sergeant and reconnaissance specialist in D Troop of the 7–17th Air Cavalry, known at the time as the “Ruthless Riders.” Schoenemann would spend long nights in the jungles of the Central Highlands of Vietnam and Cambodia, crawling through barren fields soon after they had been sprayed with a sticky, sweet-smelling substance that sometimes also rained down on them.
Weber showed me a photo that her father took as he lay in a clearing where his chopper had landed. All around him, the former jungle was withered and desiccated, like straw. The photo helped him prove to the VA he was exposed, and the VA later recognized Schoenemann as 100% Agent Orange disabled for Parkinson’s disease and post-traumatic stress disorder (PTSD). His tremors are now getting worse, and he can’t feed or care for himself, Weber told me in the steely, determined way she recounts her and her family’s countless health problems.
Growing up, Weber’s mom frequently took her to doctors because her joints were hypermobile. The ligament in her knee was reconstructed three times in middle school and high school, but it kept failing. It was like her cartilage was eating itself. At age 32, she was diagnosed with all three forms of hip dysplasia, which limits how well the thigh bone fits into the hip socket. After one of her four hip surgeries, she was walking down the sidewalk with her third-grade son when she suddenly fell face down, her foot rotated in the wrong direction and her hip dislocated. She has since had multiple spinal surgeries for her spina bifida occulta and pars defects of the spine. In total, she has had 30 surgeries.
Weber’s 16-year-old son was born premature and has severe asthma, hypermobility in his elbows and shoulders, difficulty swallowing, and a painfully twisted neck. Weber had two miscarriages before having him.
Weber’s endocrinologist wrote a remarkable letter to the VA in 2014 to support her still unsettled disability claim for second-generation Agent Orange exposure. “I am inclined to believe that Lori Weber’s father (through his exposure to Agent Orange) … passed on presumed genetic mutation to his daughter causing her birth defects and abnormal healing of cartilage and bone,” wrote Dr. Sander J. Paul, an associate professor of internal medicine at the Oakland University William Beaumont School of Medicine outside Detroit, Michigan.
Weber says the guilt that her father lives with because of her disability is heart-wrenching. She estimates she has spoken at 18 town hall meetings for veterans around Michigan, and she has met many others like her dad. “Every time I speak, I get off the stage and the veterans come up to me crying and apologizing,” she says. “My heart just breaks that they take it as their fault, when it is not.”
Many vets she talks with say their health started deteriorating around 60 years old, and with a lot of their children, things worsened around 30 years old — similar to my father and sisters.
An estimated 2 to 4 million Americans served in Vietnam, along with hundreds of thousands of Australians, New Zealanders, and South Koreans. If each one of the millions of American and other allied veterans had an average of two children after the war, as many as 8 million children of these non-Vietnamese veterans from Vietnam could be potentially affected. If 10% developed health problems, that would total nearly a million children.
This doesn’t include the estimated 3 million Vietnamese whose health has been seriously affected. Documentaries like The Children of Agent Orange depict row after row of fetuses born hideously deformed at a Ho Chi Minh hospital, their bodies misshapen, their insides spilling out, their still faces locked in quiet repose.
COVVHA cofounder Heather Bowser has traveled to Vietnam multiple times. On one visit, she toured the area where the long-closed 24th evacuation hospital had once operated in Long Binh, near the former Bien Hoa air base. The hospital was similar to the one where my father served, with a nearby air base where flyers took off to spray Agent Orange. She learned that these airmen were oftentimes ordered to dump any remaining chemicals into a nearby river rather than fly back with a full load. It was the same river that supplied the base’s water and where soldiers’ clothes were washed.
Agent Orange was routinely sprayed around the tents of soldiers and medical staff to control weeds, sometimes by nurses and doctors themselves, and it was routinely used to clear the ground for the construction of evacuation hospitals and air bases, which explains why the concentrations there are often high to this day.
“Some people think that Agent Orange exposure only came from being in the jungle,” says Bowser. “But now we know our men and women were exposed no matter where they were.”
Bowser says her dad, Bill, a steel worker in Steubenville, Ohio, died of a massive heart attack at age 50 when Bowser was 24 years old. He routinely saw areas sprayed with Agent Orange: “The area would green up really quick, and then, just a little while later, it would be completely dead,” she says. “And that’s kind of like what happened with the Vietnam veterans as well.”
Many Vietnam vets would come home seemingly healthy after the war, but their health was fleeting, like the plants sprayed with Agent Orange. She has seen many young Vietnam vets become ill and die of “old men’s diseases” long before their time.
“All this time my dad tried to fight for the VA to acknowledge his condition, and the paperwork finally came back instead from Social Security that said my father was disabled,” Bowser remembers. “My mother went to my father’s grave at the cemetery and said, ‘Well, Bill, you’re disabled. They finally admitted it.’” Her mother continued to fight the VA for her father’s benefits until they were posthumously awarded in the 2000s.
“I honestly feel like the children of Vietnam veterans will be treated in the same manner: Different generations, deny until we die,” Bowser says.
A Toxic Legacy
My father was never the same after he came back from Vietnam. A relatively idealistic, cheerful man returned fundamentally changed, my relatives told me consistently. After working nights at the now-closed Letterman Army Hospital on San Francisco’s Presidio Army Base, my father was angry, withdrawn, and depressed. My mother seldom saw him, and she remembers raising us kids mostly alone in those difficult times up until their divorce when I was five years old. As a child, my dad’s anger and violent outbursts could be terrifying.
Upon coming back to the United States, my father worked for 20 years with veterans locked up in the psychiatric wards of US Department of Veterans Affairs (VA) hospitals. He would describe chaotic scenes straight out of the film One Flew Over the Cookoo’s Nest, of wrestling violent veterans to the ground on one of the worst days of their lives. Much later did I begin to suspect that my father’s nervous laugh when recounting his day suggested that he didn’t think these stories were all that funny. To this day, I share the same nervous laugh when talking about something painful and true.
Over his life, my father endured a cascade of health problems, including heart disease, diabetes, peripheral neuropathy, post-traumatic stress disorder (PTSD), immune-system disorders, skin problems, and mental health issues. He lost his right foot to diabetes and peripheral neuropathy and underwent triple bypass surgery. Like many veterans, my dad battled the VA for decades to receive the medical care and disability benefits he felt he was owed for his Agent Orange exposure. And like many veterans, he was consistently denied benefits, and then he was mysteriously granted them. Records I have obtained show that the VA would eventually declare my father to be mostly disabled from his exposure to Agent Orange dating back to 1986.
In 1991, President George H.W. Bush approved the Agent Orange Act, which required that the VA treat the growing list of diseases associated with Agent Orange and other herbicides. As a result of the related Nehmer class-action decision, the VA would pay an estimated $4.5 billion in retroactive benefits to Vietnam veterans for health conditions resulting from their Agent Orange exposure, as well as tens of billions more each year in ongoing benefits.
My father eventually received a rating of up to 60% disability from the VA for the heart disease, diabetes, and peripheral neuropathy he suffered from. He died in 2003 following more than a week in a coma, after being found unconscious in his assisted living room from what I pieced together could have been a prescription drug overdose.
Out of the blue more than ten years later in 2014, I received a letter from the VA informing me, in typical government bureaucratese, that my father was owed more than $63,000 for long-denied Agent Orange disability claims. As next of kin, my sister Missie and I received my father’s retroactive compensation more than a decade after he was buried in the ground.
Next Up, Part 3 in the Series: How Dioxin Damages Generation After Generation
