t.Agent Orange & Birth Defects
The Legacy Continues
(By Betty Mekdeci of Birth Defect Research For Children)
The soldiers are dying. But, even more tragically, the children they have left behind are suffering. Sometimes at Birth Defect Research for Children we hear from veterans, but usually it is wives and children who send us poignant messages:
“I lost my husband from a cancerous brain tumor 13 months ago. My son has many disabilities, including Tourette’s syndrome, mental retardation, mild cerebral palsy, hydrocephalus, and he is profoundly deaf. He will never be able to live on his own.”
“My father passed away in 1998. He had many health problems, including type II diabetes. He was only 50 years old. Agent Orange has been a part of my life from the moment I was born. I was born without my right leg, several of my fingers, and my big toe on my left foot. My mother had three miscarriages. My younger brother (age 29) has to wear bifocals and suffers from chronic joint pain.”
“I served four tours in Vietnam. We have three children: one daughter with a heart defect, another with scoliosis and digestive problems, and a son born with a defective optic nerve that has left him blind in the right eye. There is no history of birth defects on either side of our family.”
Since 1991, we have recorded thousands of such cases in our National Birth Defect Registry.
Some 2.8 million Americans served in the Vietnam theater of operations. Three-to-six percent of Vietnam veterans’ children are born with some kind of birth defect (Emory University School of Medicine reports a 3-4 percent birth-defect rate among the general population). An impressive body of scientific evidence points to increases in birth defects and developmental problems in the children of Vietnam veterans and others exposed to dioxin-like chemicals.
Agent Orange was a combination of two defoliants, 2,4,5-T and 2,4-D contaminated by dioxin (TCDD), a toxic byproduct of the chemical production process. More than 19 million gallons of herbicides were sprayed in Vietnam between 1962-71. More than 11.2 million gallons sprayed after 1965 were dioxin-contaminated Agent Orange. Agents Purple, Pink, and Green used before 1965 were even more highly contaminated with dioxin.
According to Barry Commoner and Thomas Webster in their 2003 book Dioxins and Health, “the current scientific evidence argues not only that dioxin is a potent carcinogen, but that the non-cancer health and environmental hazards of dioxin may be more serious than believed previously.” They report that dioxin appears to act like a persistent synthetic hormone that interferes with important physiological signaling systems that can lead to altered cell development, differentiation, and regulation. The most troubling consequence is the possibility of reproductive, developmental, and immunological effects at the levels of dioxin-like compounds present in the bodies of the average person.
Since studies of Vietnam veterans exposed to herbicides in Vietnam have found much higher levels of dioxin in their bodies than the average person, these effects also should be detectable in their children.
In 1996, the National Academy of Sciences found “limited/suggestive” evidence of an association between Agent Orange exposure and spina bifida, a neural tube defect, in the children of Vietnam veterans. In 2000, Dr. H.K. Kang of the Environmental Epidemiology Service of the Veterans Health Administration published a study that found that the risk of moderate-to-severe birth defects was significantly associated with the mother’s military service in Vietnam. As a result of these findings, the VA now funds assistance programs for spina bifida in the children of male or female Vietnam veterans and for all birth defects without other known causes in the children of female veterans.
The Australian Department of Veterans Affairs (without acknowledging a link to Agent Orange exposure) provides treatment to the children of Vietnam veterans with spina bifida, cleft lip or palate, acute myeloid leukemia, and adrenal gland cancer.
Other studies offer evidence that many more birth defects may be associated with dioxin-contaminated herbicide exposure in Vietnam. In 1990, an independent scientific review of the literature was sponsored by Vietnam Veterans of America, the American Legion, and the National Veterans Legal Services Project. Seven prominent, independent scientists and physicians on this Agent Orange Scientific Task Force concluded that elevated incidences of birth defects in the children of Vietnam veterans were found in several studies. These included spina bifida, oral clefts, cardiovascular defects, hip dislocations, and malformations of the urinary tract. In addition, defects of the digestive tract and other neoplasms such as neuroblastoma also were higher in Vietnam veterans’ children.
Aschengrau and Monson of the Harvard School of Public Health conducted a study published in 1990 in the American Journal of Public Health on paternal military service and the risk of late pregnancy outcomes. The scientists reported that Vietnam veterans’ risk of fathering an infant with one or more major malformations was increased at a statistically significant level.
The Air Force Ranch Hand study of Vietnam veterans involved in herbicide spraying has been analyzed several times for adverse reproductive outcomes. A 1995 analysis found modest, but significant, increases in spontaneous abortion, defects of the circulatory system and heart, all anomalies, major birth defects, and some developmental delays in the Ranch Hand veterans’ children. There also was an increase in spina bifida in the children of Ranch Hand veterans with high dioxin levels.
More recent studies have found additional evidence of increases in birth defects in the children of both male and female veterans. Researchers at the University of Texas, the University of Queensland, and the University of Sydney collaborated on a meta-analysis (a review of the combined data from many studies) of Agent Orange and birth defects in the International Journal of Epidemiology. They identified all studies from 1966-2002 that had examined an association between Agent Orange or dioxin and birth defects. The study authors identified 22 studies, including thirteen Vietnamese and nine non-Vietnamese studies.
Their review indicated that parental exposure to Agent Orange was associated with an increased risk in birth defects. The association increased with greater degrees of exposure rated on intensity and duration of exposure. Although other researchers have pointed out weaknesses in the studies of birth defects from Vietnam, the birth defect association with Agent Orange exposure was statistically significant even when the Vietnamese studies were excluded.
Genetic damage in New Zealand Vietnam War veterans was investigated in a study published this year in Cytogenetic & Genome Research by researchers from the Institute of Molecular Biosciences at Massey University in New Zealand. A significantly higher frequency of genetic damage was found among New Zealand Vietnam War veterans compared to a control group. The authors suggested that New Zealand Vietnam veterans had been exposed to a harmful substance that could cause genetic damage. Although the authors recommended caution in interpreting specific health outcomes, they concluded that genetic damage to any degree has the potential to result in adverse health effects. The greatest concern about genetic damage is that it can be passed on to future generations.
Important new research on birth defects in the children of Vietnam veterans was presented at the 2006 meeting of the Society for Epidemiological Research in Boston. Three researchers conducted a study of neural tube defects (anencephaly, encephalocele, spina bifida) in the offspring of Vietnam veterans. They found that paternal blood levels of TCDD were significantly associated with neural tube defects in their children and that a particular paternal genotype (genetic predisposition) could enhance this association.
LITANY OF BIRTH DEFECTS
Since 1990, Birth Defect Research for Children has collected data on birth defects and developmental disabilities in the children of Vietnam veterans. The National Birth Defect Registry is a collaboration among seven prominent scientists to identify patterns of birth defects and disabilities in children with similar prenatal exposures.
When compared to non-veterans’ children in the registry, the children of Vietnam veterans have shown consistent increases in learning, attention, and behavioral disorders; all types of skin disorders; problems with tooth development; allergic conditions and asthma; immune system disorders including chronic infections; some childhood cancers; and endocrine problems including thyroid disorders and childhood diabetes. More and more studies of prenatal exposures to dioxins and similar chemicals are adding support for these associations.
According to Linda Birnbaum of the U.S. Environmental Protection Agency, dioxin can modulate growth and development. In the embryo and fetus, dioxin-altered programming can result in malformations, anomalies, fetal toxicity, and functional and structural deficits that often are not detectable until later in life.
In a paper published in Environmental Health Perspectives, Birnbaum discusses research that demonstrates that prenatal exposures to endocrine disruptors (chemicals that can disrupt hormone activity) such as TCDD can alter hormones, reproductive tissue development, and increase susceptibility to potential carcinogen exposure in the adult.
Increased susceptibility to chronic childhood infections and cancers later in life may be a result of dioxin’s effects on the developing immune system. Researchers in 2000 investigated the immunological effects of everyday exposures to PCBs and dioxins in preschool-age Dutch children. The researchers found that prenatal exposure to these chemicals was associated with changes in the T-cell population. They concluded that the effects of prenatal background exposure to PCBs and dioxins persist into childhood and could be associated with a greater susceptibility to infectious disease.
Another 2003 study by a team of researchers from Quebec reported their finding of a chemical imbalance that could be a marker for prenatal immune damage caused by organochlorines (which include dioxin-like compounds). The researchers found that the lymphocyte cells of newborns exposed to higher concentrations of these chemicals during prenatal development secreted fewer cytokines than those of a control group of newborns. These alterations of the immune system could lead to increased susceptibility to infection.
A growing body of evidence is linking prenatal exposures to dioxin-like chemicals to learning and behavioral deficits. At a Children’s Health Meeting
in 2000 sponsored by the National Institute of Environmental Health Sciences, Jerry Heindel reported on several studies of pregnant women who had consumed several meals of PCB-contaminated fish per month during pregnancy and who gave birth to infants with small but detectable learning and behavioral deficits. The children with the highest exposure averaged six points lower in IQ compared to children with lower levels of exposure.
A 2007 study from the Department of Preventive Medicine at Kyungpook University in South Korea reported associations between blood concentration of persistent organic pollutants (including dioxins) and increases in learning and attention disorders in children in the general population.
Thomas Zoeller, an endocrinologist at the University of Massachusetts, has found that dioxin-like PCBs activate cellular machinery that can alter the structure of other, non-dioxin-like PCBs. Some of these dioxin-induced metabolites can act directly on the thyroid hormone receptor. In the fetal brain, this could alter the course of development leading to learning and developmental disabilities.
The new research on dioxin and dioxin-like chemicals holds the promise of unraveling the intricate ways in which these chemicals can alter embryonic development. The research should continue, but it is now 35 years since Agent Orange was first sprayed in Vietnam. And the calls keep coming.
In Dioxins and Health, Thomas Webster and Barry Commoner comment: “Much of the media coverage of the dioxin debate has consisted of trying to convince the public that their common sense is wrong and that experts know best. In this case, the public’s view has been largely correct. Dioxin is a dangerous and unwanted chemical pollutant.”
Vietnam veterans who would like to add information about their children’s birth defects or disabilities to the National Birth Defect Registry sponsored by Birth Defect Research for Children can register online at www.birthdefects.org
Betty Mekdeci is the executive director of Birth Defect Research for Children.
Local family continues fight against Agent Orange
BY ANDREW METZ
August 1, 2005
BOCA RATON, Fla. -- The intercom next to Michael Ryan's pillow crackles to life. "Daddy, I need you."
Ryan hits the talk button. "I'll be right in, baby."
Every day is the same. Ryan rises from bed and lumbers through a house with scuffed and chipped walls, into the room where his daughter is waiting for him to insert her catheter, check her colostomy bag, shower her, put deodorant under her arms, dress her, fluff up her hair and lift her into a wheelchair.
He spreads toothpaste on a toothbrush and lets his daughter -- 34-years-old, brain damaged, born with one arm and other severe deformities -- complete the task, while he heads to the kitchen to take out frozen waffles or cook bacon and eggs, pour orange juice and make himself strong coffee.
By this point, Michael Ryan is usually exhausted.
"Sometimes I feel like a hemophiliac that got a million paper cuts," he said on a recent morning, chain smoking filterless Lucky Strikes. "I am slowly hemorrhaging."
Twenty-five years ago, Michael Ryan was a young Suffolk County police officer helping awaken America to the effects of Agent Orange, the chemical used to defoliate the jungles of South Vietnam. He and his wife, Maureen, and their daughter, Kerry, took the cause from Long Island to Congress and the courts, where they were headliners in a class-action suit to hold chemical manufacturers accountable.
Examples of the damage
They stood as examples of the herbicide's alleged harm to veterans' children; Kerry Ryan was born with 22 major defects that the family and their attorneys attributed to her father's stint in Vietnam. Today, two decades after the suit was settled for $180 million, the Ryans represent the hard-pressed history of Agent Orange.
Though theirs was one of the first cases filed against big name manufacturers such as Dow, in the end, the family didn't directly benefit from the accord. The settlement helped support services for veterans' offspring, but didn't provide financial compensation.
A new class of ailing veterans and their relatives has resurrected the legal battle for reparations, but whatever fight was left in Michael Ryan is now for the daily challenge of getting by. His wife, known as Mickey, died two years ago from pancreatic cancer, leaving him in charge of their daughter, a younger son, and the cavernous house in South Florida she picked out for their retirement.
"The doctors told us don't expect to live past 30," he said between visits to a hospital where his daughter was being treated for kidney and bladder stones. "Now she is 34 and Mickey's gone."
The plight of Michael Ryan and his family was widely broadcast and turned into a book, "Kerry: Agent Orange and an American Family." The revival of the campaign he starred in has made him dismayed at how little has changed.
"The story back then was how bad off she was, how many operations she had, and look, you follow up and Kerry Ryan is in the hospital waiting to be operated on," he said. "We fought the Agent Orange fight. We took it to wherever we could take it. There was nothing more we could do."
A powerful resonance
The case -- which began with a suit filed by a Patchogue lawyer and grew to encompass thousands of veterans around the nation -- has had powerful resonance. It helped imprint Agent Orange on the American conscience and sparked congressional action and federal compensation to veterans with illness linked to the herbicide.
But it was never a pot of gold and left the substance of the fight unresolved. The companies were not required to accept responsibility and the scientific connection between exposure to dioxin -- the contaminant in Agent Orange -- and disease remained in dispute, particularly the link to birth defects. To this day, the Department of Veterans Affairs limits compensation for offspring to several types of spina bifida.
Victor Yannacone Jr., the Patchogue lawyer who filed the first case in 1979 and represented Ryan and others around the country, said he looks back with great disappointment.
"The attorneys who settled this case, sold out the children," said Yannacone, who was ousted in a dispute with other attorneys before the deal.
David Dean, the veterans' chief trial attorney, said he voted against the settlement because it wasn't enough money.
"When I talk about it now, it still troubles me," he said. "If we had gone to verdict, we would have won. I will go to my deathbed believing that."
But chemical industry and court officials saw the agreement as the best the veterans could achieve from a case with major deficiencies.
"Even though the settlement was not large on a per capita basis, [the court] approved it on the basis that the plaintiffs did not have prospects of proving the case," said Steven Brock, an attorney for Dow, one of the manufacturers.
Michael Ryan, now 59, remembers weighing the odds when he reluctantly agreed to settle. He acknowledges a courtroom victory was going to be difficult.
"If we had gone to trial, if they had got me on the stand, I knew they were going to ask me, 'Mr. Ryan, on what day were you sprayed? Was it made by Dow? Monsanto? Who?'" he said. "To the lawyers, this is a legal issue. But for the veterans who are dying or their children, it is their life. I live Agent Orange 24 hours a day."
Ryan was drafted in 1965 and sent to Vietnam nine months later in a small Army advance unit that erected base camps in the jungle. He recalls watching truck-mounted cannons spray herbicide in the area, and without heed, he said he and other soldiers would catch rain runoff in their canteens.
Five weeks into his tour, he dropped from 172 pounds to 129 pounds and developed a rash called chloracne, a condition the chemical companies agree the herbicide causes. When he returned home a year later to his wife and police training, the migraines started.
A barrage of deformities
On Jan. 24, 1971, Kerry Ryan was born with a barrage of deformities, including one stunted arm, no anus, dysfunctional intestines and a hole in her heart. The shock was compounded in less than two years when she became severely brain damaged during one of the many corrective surgeries she has undergone. The couple later received a medical malpractice award that they put in trust for their daughter. But she never walked again.
The Ryans moved from Stony Brook to this community between Palm Beach and Ft. Lauderdale in 1996, after Michel Ryan retired as a lieutenant in the Suffolk Marine Bureau.
"We were supposed to come to Florida and play golf, go to the beach, spend the rest of our lives loving each other," he said. Instead, the family never caught its breath. In 1998, Ryan's 85-year-old father died at St. John's Episcopal Hospital as a result of what state investigators said was inadequate blood sugar monitoring by hospital caregivers.
His mother passed away at 79 later that year and then came Mickey Ryan's sudden death two years ago. She was 55 and the family linchpin. The couple's son, Michael, 22, who was not born with the problems of his sister, has since left college and returned home to help his father. "I needed to come home for him and my sister," the son said.
At 34, Kerry Ryan fixates on coloring books and cartoons. She is a sports fan, plays soccer in a handicap league, and is remarkably mobile, as the wheelchair-bashed walls and doors everywhere in her house prove.
Awaiting surgery at a hospital here, she grimaces at her condition. "I hate my hand," she said motioning to the stub of an arm. She is well aware of her impediments. "I have scoliosis," she explained. "My spine is collapsing."
Her father assures her, "When you go to heaven and you go to join mommy, you're not going to believe the body God is going to give you."
Talk turns to coming home -- she wants to see the new Star Wars movie -- and to the Islanders, her favorite team. "I love hockey," she said. "You have to pry me away from the TV."
Outside the hospital, Michael Ryan chokes up. "You do the best you can," he said. "You accept what God gives you and you go on. But it is just tough when you keep getting hit with things."
"Now my greatest fear is that I'm going to get cancer and leave my kids orphans."
Copyright 2007 Newsday Inc.
Boca family struggling after Agent Orange
From: Florida Sun Sentinel
By: Mike Clary, Staff Writer Submitted by Leon Gilbert
Toxic defoliant's effects outlast Vietnam War
BOCA RATON -- The young woman with the wizened body is a die-hard hockey fan, loves Harry Potter novels on tape and plays wheelchair soccer in a Boca Raton handicapped league.
"I had a pretty strong kick," said Kerry Ryan, using the better of her misshapen arms to hold up a trophy that attests to her athletic prowess.
Yet in the 25 years since Kerry Ryan and her activist parents became the public faces of the battle on Agent Orange, the poisonous herbicide blamed for health problems among Vietnam War veterans and birth defects in some of their children, little has gone well for the Ryan family.
"The last two years have been hell," said Michael Ryan, 60, Kerry's father, a retired Long Island, N.Y., police officer exposed to the toxic defoliant while serving with a U.S. Army armored cavalry unit in Long Binh. "I thought we'd buy a boat, play golf, go to the beach. But that hasn't worked out."
When Ryan, his wife Maureen, Kerry and a younger child, Michael, moved into a big house in a gated community off Military Trail in 1996, they were worn out from fighting the battle that followed him home from Southeast Asia.
As one of the lead plaintiffs in a federal class-action lawsuit against Dow Chemical, Monsanto and five other Agent Orange manufacturers, the couple spent countless hours in courtrooms, testified before Congress and traveled the nation to speak about their ordeal.
They even wrote a book, Kerry: Agent Orange and an American Family, which chronicled an inspiring tale of survival.
Kerry was born with almost two dozen birth defects, including a hole in her heart, a deformed arm and fingers, incomplete bones and muscles, and a missing lower digestive tract that had to be rebuilt.
During a surgery at 18 months, a mistake allowed her temperature to soar to 107 degrees, her father said, and she suffered brain damage.
Now 34, Kerry is legally blind and lacks the muscle strength to even cut her food. But she is verbal, exhibits a playful sense of humor and has a keen sense of self.
"It's hard to explain why I'm in a wheelchair. It's complicated," she said, relaying what she says to people who ask her what happened. "I think I'm normal. But sometimes I just say I was in a car accident."
Although the first legal battle over Agent Orange ended in 1984 when the seven chemical companies agreed to settle the suit for $180 million, individual claimants received little money and even less satisfaction. The chemical manufacturers were not required to accept responsibility for the health problems of military personnel, and a link between Agent Orange and birth defects was not established.
The Ryans received nothing from the settlement.
The disposition of that case represents "the everlasting shame of both the judiciary and the Veterans Administration," said Victor Yannacone Jr., a Long Island lawyer who filed many of the first Agent Orange suits.
Now Agent Orange is back in federal court, the focus of another round of class-action suits brought by Vietnam veterans whose health problems emerged after the 1984 settlement. Mark Cuker, a Philadelphia attorney representing several vets in the second round of Agent Orange lawsuits, credits the Ryans and their activism with "a tremendous amount of consciousness-raising" about the effects of the chemical spread so liberally in Vietnam.
Michael Ryan is not a party to current litigation. But he is struggling to hold on after a string of misfortune that threatens to break his sprit. First, his father, also named Michael, died in 1998 in a Long Island hospital after a series of nursing-care missteps documented by state examiners. That same year Ryan's mother also died.
But the biggest blow came two years ago when Maureen Ryan, called Mickey, was diagnosed with pancreatic cancer and died three weeks later at age 55. The loss of his wife of 38 years remains as fresh to Ryan as his frequent tears.
"It doesn't get any easier," said Ryan, lighting yet another of the filterless Lucky Strikes he has been smoking for 40 years.
For the Ryans, the war never seems to end. He and Kerry came home Friday after hearing that she likely would undergo another major surgery in the next few days.
As Kerry's brother Michael, 22, lifted her from the car and eased her into her wheelchair, their father slowly walked into the house and collapsed on his bed, exhausted.
"I've got to outlive her, or else she'll end up in an institution," he sighed.
Minutes later Kerry sped into the bedroom in her motorized wheelchair, narrowly avoiding a wall already well-scarred with black collision scuff marks.
"Do you want to know my single happiest moment?" she asked. "When I went to a private practice and got an autographed hockey stick from every one of the New York Islanders."
From the bed her father smiled for what may have been the first time all day.
"She never gives up," he said, "even though the bad news never stops coming."
Michael Ryan says his daughter Kerry is a Vietnam veteran, just like him.
"She belongs on the wall in Washington, D.C.," he said yesterday. "She is a casualty of Vietnam the same as any man on there." Kerry Ryan, 35, died Monday morning in her home in Boca Raton, Fla., of kidney failure after a life spent dealing with 22 major birth defects her family attributes to Agent Orange, a chemical used to defoliate the jungles of South Vietnam and Cambodia during the war. Kerry stood as an example of the herbicide's alleged harm to veterans' children.
The Ryan family became part of the national consciousness when they were the named party in a 1979 class-action lawsuit against Dow Chemical, a maker of Agent Orange.
"Kerry died because of my service to Vietnam, but it took her 35 years to die of her wounds," said Ryan, who said he was exposed to dioxin, the contaminant in Agent Orange, during a 13-month tour in Vietnam starting in August 1966.
Ryan's wife, Maureen, had an uneventful first pregnancy. But when Kerry was born in Brooklyn in 1971, she had a hole in her heart, two cervixes, no anus, a deformed right arm and spina bifida.
Maureen and Michael Ryan, then a new officer with the Suffolk County Police Department, took their newborn home to Kings Park, began a 35-year fight for truth and came to embody the open wounds of the Vietnam War after they went public with Kerry's plight.
What had happened, according to Ryan and thousands of other veterans, was exposure to Agent Orange, which was used from 1961 to 1971.
"If you could prevent just one Kerry from being born, prevent some child from how she suffered, it was a success," Ryan said. "It was important to stop it. It was wrong, what the government was doing. We had to get the message out."
In 1982, Kerry's parents wrote a book, "Kerry: Agent Orange and an American Family."
The suit was settled in 1984 for $180 million, which funded support services for veterans' offspring, but didn't provide financial compensation. The Ryan family didn't directly benefit from the accord.
Maureen Ryan, 55, died of pancreatic cancer in 2003.
Despite Kerry's medical challenges - she also suffered brain damage as a 1-year-old after being overanesthetized during corrective surgery - Michael Ryan and Kerry's aunt, Patty Stransky, said she was full of energy and taught them many lessons.
"She woke up every day happy to be alive," said Ryan, who moved his family to Boca Raton, Fla., 11 years ago. "She touched thousands of people."
Stransky added, "She knew she was shortchanged on life, yet this kid kept going and had a zest for life that was admirable."
In addition to her father and aunt, Kerry is survived by a brother, Michael Ryan, of Boca Raton.
Kerry will be cremated. A memorial will be held Sept. 23 at 1 p.m. at St. Joseph's Church in Kings Park.
Copyright (c) 2006, Newsday, Melville, N.Y. Distributed by McClatchy-Tribune Business News. For reprints, email email@example.com, call 800-374-7985 or 847-635-6550, send a fax to 847-635-6968, or write to The Permissions Group Inc., 1247 Milwaukee Ave., Suite 303, Glenview, IL 60025, USA.
Honey Sue...........Caught Between The VA And A Hard Place
Article published in the November/December edition of The VVA Veteran
BY RICHARD CURREY
Honey Sue Newby is 36 years old now. Born in 1971, her father served eight years in the Marines and saw three combat tours in Vietnam. When Honey Sue was born, her mother, Suzanne Nesler, knew something was wrong.
“Something was amiss,” Suzanne said. “Honey Sue had severe jaundice and they kept her in the hospital for further observation.”
What was wrong turned out to be spina bifida, a congenital disorder that involves incomplete development of the brain and spine. One of a group of abnormalities known as neural tube defects, spina bifida is caused by the failure of the spinal column to form correctly during the first month of pregnancy.
Spina bifida children can have missing vertebrae or even exposed spinal tissue that necessitates surgical repair. This birth defect can result in paralysis along with associated deformities, bowel and bladder incontinence, varying degrees of mental retardation, seizures, and a condition known as hydrocephalus (“water on the brain”).
People with spina bifida are often forced to use wheelchairs. Many have a wide range of disorders, including seizures, mental and emotional developmental delays, and learning disabilities. They require lifelong care and ongoing medical interventions to manage infections, emergencies, and other complications.
And the lives of their families—parents, guardians, and caregivers—are forever changed, redefined by the disability and its needs.
SEARCHING FOR ANSWERS
The precise cause of spina bifida is unclear, although scientists point to genetic causes as well as environmental exposures. While we understand the mechanics of spina bifida at the genetic and cellular levels, why it happens in the first place is still largely a mystery. Why, in some babies, do the cells that form the tissues of the brain, spine, and nervous system fail to normalize early in pregnancy?
Researchers are still searching for the answer.
The story of Honey Sue Newby is inextricably linked to research that has looked with great interest at possible environmental causes of spina bifida. Might toxic contaminants be a factor? Could dioxin—the operative chemical in the defoliant routinely referred to as Agent Orange (AO)—incite a mutation or cause some damage that is later passed on to an unborn child?
The evidence to support this theory remains mixed, but the Institute of Medicine (IOM) postulated that the scientific basis for an AO-spina bifida connection was at least “limited or suggestive” in a report issued in 1996. The association between AO and spina bifida or any other congenital birth defect was viewed as “tentative,” and some members of the IOM’s AO expert panel thought the evidence was, in the words of panel chair Dr. David Tollerud, “far from conclusive.”
Still, the association was made and a national discussion was launched, in itself a victory for thousands of veterans who believe their diabetes and cancers and other odd or unexpected illnesses are in some way linked to AO exposure while serving in Vietnam. Interestingly, the link between dioxin and birth defects had, in fact, been established in laboratory animals many years earlier—the very reason the United States ceased use of all defoliants in 1971.
The link between AO and birth defects in humans, however, has never been proven beyond absolute doubt—at least according to some scientists. Unless, as many Vietnam veterans believe, they were and are the human “lab rats” that prove the disastrous health impacts of AO in a tide of illness and disease that has besieged the VA and burdened a generation of veterans.
Shortly after the IOM report was issued, the VA backed legislation strongly supported by VVA that would provide benefits for the children of Vietnam veterans who had spina bifida. The Agent Orange Benefits Act, which was signed into law on September 26, 1996, established a benefits package for veterans’ children with spina bifida and authorized the VA to provide benefits as of October 1, 1997. These benefits include lifetime health care services for spina bifida and any associated disability, a monthly stipend that can reach nearly $1,500, as well as VA vocational training and rehabilitation services.
But getting those benefits, particularly health and medical services, can be virtually impossible, according to Ron Nesler.
Nesler is Honey Sue Newby’s stepfather, and, with his wife Suzanne, her guardian and caretaker. “The VA recognizes about 1,200 children of veterans who are disabled as a result of AO exposure of one of their parents,” Nesler said. “Of those 1,200, there are about 200 children who are recognized as totally disabled as a result of their father’s AO exposure. These individuals are designated as ‘Level III’ cases.”
In theory, Nesler explains, all Level III individuals receive total health care from the VA. “But in practice,” he said, “they receive virtually none.”
Nesler described what might happen if Honey Sue Newby needs health care. “The first thing we must do is have a doctor write a letter stating that her condition is related to her spina bifida.” This must be done, Nesler added, despite the fact that Honey Sue is an officially designated Level III individual—which means essentially that none of her medical problems will ever not be related to spina bifida.
“Basically, we have two choices,” Nesler said. “Not getting hospital care or falling back on Medicaid. That’s because it takes months and months to get anything approved through the VA.” Even then, Nesler contends, the VA will not approve care without a fight. “The last time we had anything done through the VA, it took congressional intercession to get the care that Honey Sue needed.”
Suzanne Nesler refers to her husband as a “bulldog” when it comes to fighting on behalf of Honey Sue. But Ron Nesler maintains that his persistence is necessary to get anything done.
He offers an illustrative example: “Honey Sue, due to her brain abnormalities, has a great many seizures. She has had them for years, and in the course of these seizures she grinds her teeth. Through many seizures over several years, she ground her teeth down so badly she needed crowns for every tooth.” This problem clearly is a direct result of her spina bifida, and the Neslers have multiple letters and statements from doctors and dentists saying just that. But they found the VA difficult to deal with, sometimes encountering rude or abrupt employees. Then there are the confusing or contradictory regulations.
And the interminable delays.
The dental crowns ultimately were approved by the VA, but about a year later Honey Sue developed an abscess under one of the crowns that invaded her jaw and led to recommendations for surgery. “We again had the letters from the doctors and the dentists, and every one of them agreed that the condition was a result of spina bifida,” Nesler said. “They agreed that she ground her teeth down due to seizures related to spina bifida and her condition [with the invasive infection] was therefore directly related.”
One doctor made it clear: If Honey Sue did not have intervention soon, she would risk major reconstructive jaw surgery, and might even lose portions of her jaw bone and cheek.
But the VA resisted. It took six months to get VA coverage, for a procedure that every doctor and dentist involved in the case agreed was absolutely necessary and was a direct result of spina bifida.
A VA spokesperson, however, suggested the Nesler’s predicament is not typical. Glenn A. Johnson, Chief of Communications for the VA’s Health Administration Center in Denver, home to the VA Spina Bifida Health Care Program, says that the agency has not noted any difficulties in administering its AO-spina bifida benefits program.
“There is an application process in which the parent of the afflicted child must prove that he or she was indeed serving in Vietnam at any time between early 1962 and May 1975,” Johnson said. “Once the child is registered as a beneficiary, health-care is readily available. In fact, the beneficiaries of either program have the complete freedom to see any health care provider they wish and simply submit the bill for their treatment to the VA’s Health Administration Center in Denver for payment.”
However, Honey Sue’s problems result not from difficulties in being accepted into the VA Spina Bifida Health Care Program; rather, from accessing care. “The core problem is that she must reprove her status each time she needs care,” said Nesler.
BAttling the system
Ron and Suzanne Nesler maintain that their experience has been very different. “It’s not just the VA,” Nesler said. “We’ve battled Medicaid, too. Here in Indiana, where we live, we had to hire an attorney and pay $2,000 out of pocket to force the State Medicaid administration to recognize Honey Sue’s illness and approve her for coverage. A large problem is that most people, even doctors and healthcare administrators, are not very familiar with spina bifida.”
Glenn Johnson agrees that problems at the VA also might arise out of lack of knowledge. “In many cases,” Johnson said, “veterans service officers have only a partial knowledge of these programs and may unintentionally mislead or misinform potential beneficiaries about the application process and benefits. This can cause long delays or even the erroneous denial of benefits.”
This, Johnson implied, may be what happened in the case of Honey Sue Newby. But all that Ron and Suzanne Nesler know is that their attempts to care for Honey Sue have been uphill battles requiring extraordinary commitment and a fierce focus on getting the right thing done.
“I really think the congressmen who voted for this legislation believe they have provided health care for the Level III AO-affected children of veterans,” Ron Nesler said. “But the fact is that the health care is all but inaccessible. Honey Sue has been officially rated a Level III since she was 30 years old, and in all that time, the only thing the VA has covered was her dental issue and that needed congressional intercession.” Nesler noted that much of Honey Sue’s medical care is of an emergency nature, making a lengthy VA application process medically inappropriate.
The medical issues of most spina bifida-affected individuals will almost always be urgent or emergent. Nesler finds it confounding that, although this is common knowledge, the VA has put a program in place that can take months to process a single request for care.
“The bottom line is we depend almost entirely on Medicaid for Honey Sue’s health care,” Nesler said. “Here we have a 36-year-old person who is profoundly handicapped secondary to her father’s service in Vietnam. On the one hand, we have the Department of Veterans Affairs who says yes, this person is disabled secondary to her father’s military service and is entitled to full medical care, but, on the other hand, they deny her that medical care.”
The VA’s public information materials regarding AO-spina bifida benefits seem to agree with Ron Nesler as well as Glenn Johnson of the VA: Honey Sue Newby, a designated Level III AO-spina bifida individual, should receive unlimited VA medical benefits. According to Johnson, the Neslers should be able to take Honey Sue to any clinic, hospital, emergency room, or doctor’s office in the land and receive treatment. If the VA coverage is not honored immediately at the point of care, the bill may be submitted to the VA for payment.
The Neslers have encountered something quite different. “The staff at hospitals sometimes look at our VA card like we’re trying to pull a scam. I don’t think they’ve ever seen one before. They certainly don’t know what to do with it.”
Indirect Casualties of war
The scientific debate continues at full boil. As late as June of this year, when the Ford Foundation launched the U.S.-Vietnam Dialogue to explore and address AO damage in Vietnam, the old disagreements among leading AO researchers flared. It always comes back to the paucity of hard evidence surrounding AO’s role in birth defects, a debate that will clearly rumble on for some time. But Ron Nesler has a stepdaughter to care for.
“Congress has deemed Honey Sue’s medical condition, and that of others like her, to be a compensable disability,” he said. “The VA has confirmed through its own regulatory policies that Honey Sue is entitled to benefits. This status was earned by her father’s three separate 13-month tours under fire in Vietnam.” If we can compensate the veterans themselves, Nesler contends we can care for their disabled children who are indirect casualties of war.
After what Nesler refers to as “years and years of lobbying with the help of John Garcia, New Mexico Secretary of Veterans Affairs,” he managed to see a memorial passed as a joint resolution in the New Mexico State Legislature. The Neslers lived for a time in Las Cruces, and State Rep. Nathan Cote introduced the joint memorial that urges the U.S. Congress to fully fund medical care and aid and attendant care services for Honey Sue and all other fully disabled Level III spina bifida children.
“This has no actual legislative weight, of course,” Nesler said, “but it does recognize by official decree in at least one state legislature that Honey Sue Newby and approximately 200 other similarly affected individuals are totally disabled as a result of spina bifida that is attributed to their fathers’ combat service in Vietnam. This memorial has been our biggest victory so far.”
The New Mexico memorial calls for Congress to provide full medical care and attendant care to Honey Sue Newby and the other Level III spina bifida children who are totally disabled as a result of their birth parents’ military service in Vietnam. It was resolved “that the New Mexico congressional delegation work vigorously for adequate funding to provide full medical care and aid and attendant care to all Level III spina bifida children who are totally disabled because of the effects of Agent Orange used in Vietnam.”
Without her or her husband, Suzanne Nesler fears for her daughter’s ongoing care. She worries that Honey Sue could end up being warehoused in a long-term charity care facility where her needs will not be met—or even cared about.
The Neslers relate a recent episode in which Honey Sue suffered a series of seizures. “When that happens, she does not sleep, and when Honey Sue does not sleep, we cannot sleep,” Ron Nesler said. “We found ourselves in an ER seeking help. We spent eighteen hours there because no insurance would cover Honey Sue. Then they hauled us off to a hospital that we later realized was a detox center for alcoholics and addicts. Sue and I simply had no choice—that was how bereft we were of options.”
Desperate for sleep, the Neslers left Honey Sue in the detox center for two days while they got some vital rest.
Suzanne Nesler, though, was incensed. “She was in there with adult men. Not even women! That’s where they sent her! And the patients were allowed to wander in and out of Honey Sue’s room.” Nobody, it seems, was minding the store. Honey Sue was restrained and heavily sedated. “She wouldn’t have been able to even call out for help if she had to. This is what can happen if Honey Sue’s care were left to other people. We can keep her safe when we’re around but what happens when we’re not?”
Ron Nesler concurs. “Realistically, how much longer are we going to be able to take care of Honey Sue? Both her mother and I are in our 60s. When does the VA step up to fulfill its responsibility. We think it’s past due.”
Yet another aspect of AO-related spina bifida is the dearth of available information or resources. A Google search using several combinations of search terms yields very little information on the care of AO-spina bifida individuals. To investigate this story further, I turned to the Spina Bifida Association (SBA), a national advocacy organization and clearinghouse. The SBA, according to the organization’s website, aims at prevention “of spina bifida and to enhance the lives of all affected. Since 1973, SBA has acted as the nation’s sole voluntary health agency, working to improve the lives of those with spina bifida.”
The SBA website includes information about the Agent Orange Benefits Act among its FAQs and its fact sheets. Yet when I contacted the SBA about Honey Sue, I was advised by SBA Director of Communications Amanda Darnley that since SBA “has no experience with the service or related problems with this program, we are not in a position to comment.”
The nation’s leading spina bifida organization is not in a position to comment? This response is consistent with the Neslers’ experience and, through them, the plight of Honey Sue Newby—that assistance of any stripe in caring for a spina bifida-affected person is very hard to come by.
Glenn Johnson of the VA says the best thing to do is to go to the program’s website, www.va.gov/hac and proceed to the spina bifida pages: www.va.gov/hac/forbeneficiaries/spina/handbook/sbhandbook.pdf
Or call the Denver VA Regional Office toll-free at 888-820-1756, or reach them by email at firstname.lastname@example.org or the VA Health Administration Center at 800-733- 8387 to find out exactly what needs to be done to apply for benefits or inquire about a claim. Johnson emphasizes that the application process for both health care programs is administered only by the Denver VA Regional Office.
On April 24, 2007, Ron Nesler’s testimony before the House of Representatives Committee on Veterans Affairs was presented by Rep. Brad Ellsworth (D-Ind.). As part of a day of hearings before the Subcommittee on Disability Assistance and Memorial Affairs, Rep. Ellsworth read Nesler’s emotional account into the record.
“We are told by the VA that Level III AO-spina bifida is the approximate equivalent of a 100 percent service connected disability rating for a military veteran,” Nesler said in his testimony. “As a Level III totally disabled AO-spina bifida child, Honey Sue receives about $1,500 per month in VA compensation. [Yet] a 100 percent service-connected disabled veteran whose situation mirrors Honey Sue’s as to cause and result receives about $2,500 per month.
“Honey Sue and the roughly 200 other Level III children receive only scraps of very-difficult-to-access health care coverage from the VA. And these bits and pieces of health care specifically exclude Honey Sue’s greatest need, which is aid and attendance care. Yet the 100 percent service-connected disabled veteran receives full medical care, including aid and attendance when needed.”
Nesler testified that Congress created the law recognizing Level III children as totally disabled as a direct result of a birth parent’s military service, and therefore “Congress should insure full health-care benefits, including aid and attendance care for these children—both Honey Sue and the 100 percent service-connected, disabled veteran are conceded to be totally disabled as a result of military service. They should be treated the same.”
Honey Sue’s biological father, the U. S. Marine with three Vietnam War tours to his credit, suffered crippling PTSD after his service years and now has A/O-related cancer. His life never pulled together, and he was ultimately committed to a VA mental health facility in Texas. His daughter also has seen her life irrevocably changed by the Vietnam War. Like so many dark legacies of that war, this one is troubled, contentious, and with no resolution in sight more than 30 years since the war ended.