Remembering the Children of Agent Orange: What Remains
Agent Orange took my father, and quite likely took my sisters. My story is frighteningly common. Part 4 in a series.
In the third part of this series, I chronicled the intergenerational genetic damage of a modern-day environmental disaster in Vietnam. In this final part, I explore how the health effects of Agent Orange played out so tragically in my own family, and what America owes to those who have survived.
Part 1: A Personal Investigation
Part 2: Generations of Loss
Part 3: How Dioxin Damages Generation After Generation
Part 4: What Remains
My father constantly talked about his Agent Orange exposure and battles to receive benefits from the VA. So I’ve long lived with the knowledge of what many veterans suffered.
But my family began to seriously suspect that his Agent Orange exposure could have also somehow affected my sisters’ health in 2007. That year, my sister Ami was diagnosed with ALS, a rare and devastating neurodegenerative disease that causes paralysis and near-certain death within two to five years of diagnosis for the vast majority of people. She lived outside Memphis, Tennessee, an hour’s drive from where my family once had a farm in northern Mississippi.
The first inkling that Ami had ALS was after the birth of her second child, Deke. She couldn’t hold up her left arm and started wearing a sling to help breastfeed him. After a painful spinal tap, the doctor bluntly told Ami that she had ALS. It was clear that the diagnosis was correct when she rapidly needed a hulking motorized wheelchair to get around. Once on a visit, I cut up my younger sister’s food and fed her. I bumbled around trying, without much skill, to help transfer her into her bed at night.
Ami passed away 11 years ago after suffocating to death. She had just reached the stage where she couldn’t quite breathe on her own without assistance, like many ALS patients.
Much later, I learned that dioxin exposure significantly increases the risk of ALS. The connection between Agent Orange and ALS in the children of veterans hasn’t been studied, but scientists know that US veterans from all wars are twice as likely to suffer from ALS, a disease that the military now automatically presumes to be service-connected for those unlucky enough to suffer and quickly die from it.
The death of Ami’s twin sister, Missie, came a decade later. She collapsed suddenly in her apartment in Austin, Texas, in the summer of 2020, her oxygen levels falling dangerously low while tethered to oxygen. She fought for years against multiple health problems, cycling in and out of psychiatric hospitals and nearly dying seven years earlier while in a coma for three months with acute respiratory distress syndrome (ARDS) — what seriously ill COVID-19 patients also suffer from — after she contracted the H1N1 flu. The lung, immune system, and mental health conditions she suffered from are quite common among the children of veterans conceived after Vietnam, I soon discovered.
In the sticky heat of a still summer morning, I helped bury Missie in a country cemetery amid fragrant oaks and wildflowers in the woods of Central Texas. As I watched Missie’s ashes being poured into the ground, I led my family in singing the old-time gospel hymn “Nearer My God to Thee.” Further than ever from God, I was filled with dark thoughts that grew increasingly loud.
“Your father told me he wished he’d never had the girls,” a relative told me about my sisters, after Missie’s passing. “Because of his immune system, they were compromised. He was glad you were conceived before he went to Vietnam.”
A wave of survivor’s guilt crashed over me.
Cataloging the Suffering
What my family experienced is incredibly common: Children conceived by male veterans before Vietnam were healthy, while those conceived after Vietnam were terribly sick.
A groundbreaking 2016 investigation from ProPublica and The Virginian-Pilot found that the odds of having a child born with birth defects and severe health problems were more than a third higher for veterans exposed to Agent Orange than for those who weren’t. Ten years earlier, researchers conducted a meta-analysis of 22 studies of Agent Orange and birth defects, published in 2006 in the International Journal of Epidemiology, finding an almost doubling of the risk of birth defects on average, with three times higher risk among the Vietnamese, who were often more highly exposed.
A previously unreported analysis that I have uncovered from the advocacy group Birth Defect Research for Children compared 2,189 children of fathers who were Vietnam veterans with 3,778 children of non-veteran fathers. The group found a host of profound differences between the two populations. Executive Director Betty Mekdeci says that after the group’s National Birth Defect Registry was founded in 1990, results immediately began pouring in showing much higher rates of structural birth defects like spina bifida, cleft palate, heart and limb defects, and muscle defects from the children of Vietnam veterans. The group has assembled the largest private registry of the children of veterans in existence.
Mekdeci is intimately familiar with birth defects. Her son was born with a heart defect and a missing hand after she took a drug used to treat morning sickness called Bendectin. For ten years, Mekdeci fought Dow, the company that bought the company that made the drug and that incidentally also made Agent Orange, as part of a class-action lawsuit that led to Bendectin being temporarily taken off the market in 1983.
Mekdeci thinks the links between Agent Orange and structural birth defects may be just the “tip of the iceberg.” The more frequent outcomes of prenatal exposure to dioxin may be in the area of immunological, neurological, and neuroendocrine problems — what are now known as “functional” birth defects, which the NIH has also recognized. Her registry started finding numerous reports of significantly higher levels among veterans’ children of functional birth defects such as cancers and tumors; immune disorders such as chronic infections; endocrine disorders such as thyroid disorders and diabetes; learning, attention, and behavioral problems; gastrointestinal problems; and allergy, asthma, and skin problems.
At the request of veterans, the group added questions to its registry about the grandchildren of Vietnam veterans. So far it has included about 300 grandchildren. She’s seeing the same pattern in grandchildren as in the children of veterans.
In 1965, the English statistician Sir Austin Bradford Hill proposed a set of nine criteria proving a connection between a presumed cause for disease and a disease appearing in humans. Former NIH leader Linda Birnbaum thinks many of the Bradford Hill considerations have been met, based on seeing similar results in epidemiological data involving a number of different populations of people and animals, including in highly sprayed areas of Vietnam.
But the connection between exposure and disease in children is going to be very hard to ever prove conclusively, Birnbaum says. Many doctors think that if you can’t do a controlled, double-blind, randomized trial, you can’t prove anything, she says. And of course, scientists are never going to do that with dioxin, or any other harmful chemical, since they cannot deliberately expose people to something toxic.
To determine which of these effects could be affecting the children and grandchildren of Agent Orange-exposed veterans, the VA is currently conducting two long-delayed initiatives — the Vietnam Era Health Retrospective Observational Study (VE-HEROeS) and the Intergenerational Effects of Military Exposures Work Group (IEMEWG) — which are among the efforts that Congress ordered in 2016 through the Veterans Health Care and Benefits Improvement Act.
The VA told me it hopes to soon see published in a medical journal a study it recently completed, containing data comparing the health of the children of Vietnam vets with non-veterans. The VA twice turned down Freedom of Information Act requests I submitted to receive that study or its raw data.
If the study were to add new details about specific diseases in the children of male veterans exposed to Agent Orange, it might be the closest thing yet to the US government’s admission that the government is once again preparing to expand benefits to millions more people in poor health. It would also open up the government to potentially billions of dollars in benefits and health care owed not only to Americans and other allies, but also to the Vietnamese people.
These efforts are, to a large degree, the result of ceaseless efforts by veterans and their families, including more than 100 emotional town hall meetings around the country held by the Vietnam Veterans of America. “We’ve been waiting patiently for the VA to start the research, and it hasn’t happened,” says Mokie Porter, communications director of the VVA. “If Vietnam veterans don’t address this for their kids, I don’t know who will.”
What Remains
When the Air Force began spraying toxic herbicides over Vietnam to clear the jungle, destroy food supplies, and drive Vietnamese civilians to abandon their villages and resettle in US-run camps, the Air Force top brass hardly considered that dioxin could contaminate the military’s own troops. But the program did. It was an enormous operation, damaging or destroying 3 to 5 million acres of forest and a half million acres of crops — more than 10 percent of Vietnam — and involving an estimated 4.8 million Vietnamese and American troops.
Many veterans disabled by Agent Orange are now in their 70s. Those who are still alive won’t live much longer in order to see justice done for them and their children. The hundreds of thousands of sick and dying children who have inherited their parent’s toxic legacy of Agent Orange exposure are now in their 40s and 50s.
Beginning in the 1980s, millions of veterans have been party to lawsuits and court cases. The largest was a 1984 out-of-court-settlement on behalf of 2.4 million Vietnam veterans who were exposed to Agent Orange, directed at seven chemical companies that manufactured the herbicides, including Dow and Monsanto, since veterans cannot legally sue the US government. The companies ultimately agreed to pay $240 million in compensation to the veterans or their next of kin as a result of an unprecedented mass class-action toxics case, the first in American legal history. The long-running case demonstrated that the government and its suppliers knew that the cocktail of herbicides sprayed across Southeast Asia and around the world was contaminated with dangerously high levels of long-lasting dioxin.
Over the years, however, the VA has matched these damning legal settlements with frequent denials of disability benefits, like it did with my father all of his life. Under legal and legislative pressure at the national level it has paired those denials with mysteriously granted additions to the long list of diseases linked to Agent Orange, three more of which Congress approved on January 1, 2021, following a rare Congressional override of President Trump’s veto of the 2021 defense authorization bill, which included a measure extending disability benefits to an estimated 34,000 additional veterans. These sudden benefits changes, totaling billions of dollars in disability payments since the Vietnam War to US veterans, and sometimes their children, are the only admission of guilt that the US government has ever offered to those who have suffered.
Agent Orange wasn’t an aberration: Similar damage continues to this day among the next generation of veterans and their children, thousands of whom have fallen sick and died after being exposed to toxics spread over Iraq, Afghanistan, and elsewhere in the Middle East after the disposal of chemicals, munitions, petroleum products, plastics, and other hazardous waste materials in open-air burn pits. President Biden believes his late son Beau is one of these victims.
One potential avenue for justice among those exposed is the Victims of Agent Orange Act of 2021, proposed by Rep. Barbara Lee in June 2021, which has been repeatedly introduced over the years and has received bipartisan cosponsors. It would direct the VA to research Agent Orange health issues among US and Vietnamese soldiers and citizens, and would specifically provide benefits to the children of male Vietnam veterans who are affected by certain birth defects, as well as the children of Vietnamese or Vietnamese Americans whose relatives were exposed.
The bill’s passage is a long shot, given recent developments: In June 2021, a French court dismissed an Agent Orange lawsuit filed against 14 chemical companies, including Dow and Monsanto, for “ecocide,” or serious crimes against the environment. The 74-year-old woman behind the suit is Tran To Nga, a French-Vietnamese citizen who suffers from diabetes and cancer from her exposure to Agent Orange and who lost a child from a heart malformation and nearly lost another to a blood disease. Her work has been featured in the documentary The People vs. Agent Orange, scheduled to air on PBS in late June 2021. In reaction to the French court’s dismissal, she was resolute: “Truth is on our side.”
Paying for disabled children’s health care and disability-related expenses is only the start of what the US government could do. Lori Weber and many other veterans and children disabled by Agent Orange want the government to complete a health study of the children of Vietnam veterans. She says it’s only fair that the 18 presumptive birth defects already recognized for female Vietnam Veterans be extended to male veterans. Weber would also like to see children covered under the VA program that currently pays for some of the health care costs of the spouses of disabled and deceased veterans.
But counting, cataloging, and compensating the dead and dying will not go far enough for some children. For Laura Nichols, the child of a female veteran from North Carolina, listening to and helping children like her would be better than any amount of money. The benefits she has received have been a slap in the face: “Here, take this and go away,” she says of the government. “We don’t want to hear from you anymore.”
A Final Coda for the Survivors
Things could change given the arrival of the father of a veteran in the White House. In October 2020, then presidential candidate Biden promised veterans swift action to treat certain diseases as presumptively service-connected. Biden has called for expanding the list of Agent Orange-connected diseases, and promised action to publish long-delayed studies on the effects of Agent Orange in the descendants of exposed veterans. His administration could very well agree to pay long-overdue benefits and provide health care to hundreds of thousands of sick and disabled US children. “We have to right this wrong and make sure nothing like this ever happens again,” Biden said to veterans during the 2020 presidential campaign.
Regardless of these recent promises, can veterans and their children ever forgive what’s happened in the past, and what continues to happen in the present?
Writing about a dead child in Requiem for a Nun, William Faulkner wrote: “The past is never dead. It’s not even past.” Faulkner composed his most famous line from his magnolia-lined home at Rowan Oak in Oxford, where I took walks as a freshman at the University of Mississippi, sometimes with Ami, my sister and best friend.
But after years of walking away from what happened to my family, and after trying and failing to forget, all I want to do now is remember.
Someday when the coronavirus pandemic finally recedes, I hope to join together in person with others in a performance of one of the many requiems I’ve performed over the years as a professional choral singer. This time, however, I pray that the requiem will be for the veterans, children, and other victims felled by Agent Orange.
Like the supplicants of ancient religious rites, we will once again intone these words in memory of the dead: “Have mercy on us. Deliver us. And grant us rest.”
A version of this story is scheduled to appear in Current Affairs later in 2021.
