TIME LIFE ARTICLE ON DEFORMED Gulf War
TIME LIFE ARTICLE ON DEFORMED KIDS.htm
When our soldiers risked their lives in the Gulf, they
never imagined that their children might suffer the consequences--or that their
country would turn its back on them.
Jayce Hanson's birth defects may stem from his father's Gulf War service. But
like hundreds of other families, the Hansons face official stonewalling--and a
He gets ear infections constantly, but he never really cries.
You know how most children scream when they get earaches? Maybe he's immune to
pain." -CONNIE HANSON
Flying kites with his sister, Amy, he displays a fierce determination.
"He's a problem solver," says his father, Paul. Jayce suffers from a
syndrome similar to that of the thalidomide babies of the 1950s. But his mother,
Connie, took no drugs.
rom outside, the evil that has invaded Darrell and Shana Clark's home is
invisible. Set on a modest plot in a San Antonio subdivision, equipped with a
doghouse and a swimming pool, the house is a shrine to the pursuit of
happiness--a ranch-style emblem of the good life Darrell and 700,000 other U.S.
soldiers fought for in the Persian Gulf four years ago.
Inside, the evil shows itself at once. It has taken up residence in the body of
the Clarks' three-year-old daughter, Kennedi.
On a Saturday afternoon, Darrell and Shana huddle in their paneled living room.
They are in their mid-twenties, robust and suntanned, but their eyes are older.
Kennedi toddles about, pretending to snap pictures. You see the evil's imprint
when she lowers the toy camera: Her face is grotesquely swollen, sprinkled with
red, knotted lumps.
Kennedi was born without a thyroid. If not for daily hormone treatments, she
would die. What disfigures her features, however, is another congenital
condition: hemangiomas, benign tumors made of tangled blood vessels. Since she
was a few weeks old, they have been popping up all over--on her eyelids and
lips; in her throat and spinal canal. Laser surgery shrinks them, but they
return again and again. They distort her speech, threaten her life. And,
inevitably, they draw the stares of strangers. "When people see her,"
says Shana, "they say, 'Ooh, what happened to your baby?'"
Neither Shana nor her husband can answer that question conclusively, but they
suspect that Kennedi's troubles have their origins in the Gulf, where Darrell
served as an Army paratrooper. During operations Desert Shield and Desert Storm,
he faced a mind- boggling array of environmental hazards. Like an estimated
45,000 of his comrades, he has developed symptoms--in his case, asthma and
recurring pneumonia--linked to an elusive affliction known as Gulf War syndrome.
And like a growing number of Gulf War veterans, some of whom remain apparently
healthy, he has fathered a child with devastating birth defects.
-ADM. ELMO ZUMWALT JR.
[The veterans] need to keep the pressure on because . . . the companies who
stand to be found liable will be in there lobbying."
Jayce is remarkably agile. He can feed himself marshmallows (above) or shimmy
quickly across a floor. But learning to walk on prosthetic legs (right) is
terribly difficult without arms to use for balance. Jayce's mother, Connie
(left), holds up a mirror to help him with coordination. A devout Christian, she
faces her family's troubles stoically. "I accept what God has given
us," she says, "and try to make the best of it."
Researchers have been probing Gulf War syndrome since late 1991, when returning
soldiers reported a spate of mysterious maladies. Conclusions have been slow to
arrive. Last June the federal Centers for Disease Control (CDC) confirmed that
Gulf vets were unusually susceptible to a dozen ailments--from rashes to
incontinence, hair loss to memory loss, chronic indigestion to chronic pain. But
in August a Pentagon study concluded that neither the vets nor their loved ones
showed signs of any "new or unique illness." Veterans' advocates
disputed that finding, as did the National Academy of Sciences' Institute of
Medicine, which declared that the report's "reasoning . . . is not well
explained." And while there is, as yet, no absolute proof that Gulf vets'
babies are especially prone to congenital problems, patterns of defects have
begun to emerge--patterns unlikely to result from chance alone.
During the past year, LIFE has conducted its own inquiry into the plight of
these children. We sought to learn whether U.S. policies put them at risk and
whether the nation ought to be doing more for them and their families. We also
aimed to determine whether, as some scientists and veterans allege, the
military's own investigation is deeply flawed.
The future of this country's volunteer armed forces--institutions dependent on
citizens' willingness to serve, and therefore on their trust--may rest on the
answers to such questions. Certainly, soldiers expect to forfeit their health,
if necessary, in the line of duty. But no one expects that of a soldier's kids.
"When people see her they say, 'What happened to your
baby?'" -SHANA CLARK
"Adults are worse than children as far as staring," says mom Shana.
Kennedi's dad, Darrell, tested positive for radiation exposure, but unless his
testes are dissected no link to her condition can be proved.
ea' Arnold was not born to a soldier, but she might as well have been: Her
father went to the Gulf as a civilian helicopter mechanic with the Army's 1st
Cavalry Division. On a Wednesday morning, Lea' lies naked in her parents' bed,
in a small house off a gravel road in Belton, Tex. A nurse looms over her,
brandishing a plastic hose.
"Don't hurt me," wails Lea.
"I'm not going to hurt you, sweetie," says the nurse. "You need
As the nurse administers the catheter, Lisa Arnold--a sturdy woman who carries
her sadness on broad shoulders--tells the story of her daughter's birth.
"The doctor said, 'Well, she's got a little problem with her back.' They
let me hold her for a minute, and then they took her to intensive care."
Lea' had spina bifida, a split in the backbone that causes paralysis and
hydrocephalus, or water on the brain. She needed surgery to remove three
vertebrae. "They told us that if she lived the next 36 hours, she'd have a
pretty good chance of surviving. Those 36 hours . . . it's kind of indescribable
what that's like."
Three years later, Lea' has grown into a redhead like her mother, with the
haunted face of a medieval martyr. She cannot move her legs or roll over. A
shunt drains fluid from her skull. "She tells me every night that she wants
to walk," says Richard Arnold, a soft-spoken ex-Marine.
Richard, who had fathered two healthy children before he went to war, was
working for Lockheed in the Gulf. But he bunked in the desert with the
troops--and that meant swallowing, inhaling and otherwise absorbing some very
dicey stuff. According to a 1994 report by the General Accounting Office,
American soldiers were exposed to 21 potential "reproductive
toxicants," any of which might have harmed them as well as their future
children. They used diesel fuel to keep down sand. They marched through smoke
from burning oil wells. They doused themselves with bug sprays. They handled a
toxic nerve-gas decontaminant, ethylene glycol monomethyl ether. They fired
shells tipped with depleted uranium. Other teratogens--materials that cause
birth defects--may have been present too. One possibility is that desert winds
bore traces of Iraqi poison gas
Some physicians who have treated Gulf vets believe they may be suffering from a
general overload of chemical pollutants--and that their body fluids are actually
toxic. (Indeed, many veterans' wives are sick; a few complain that their
husbands' semen blisters their skin.) "It was a toxic environment,"
says Dr. Charles Jackson, staff physician for the Veterans Administration
Medical Center in Tuskegee, Ala. Other doctors, while agreeing that chemicals or
radiation may have caused birth defects, think the vets' ills came from a
germ--an unknown Iraqi biological warfare agent, perhaps, or some form of
leishmaniasis, a disease carried by sand flies.
Government scientists generally discount these theories. "The hard cold
facts" are simply not there, says Dr. Robert Roswell, executive director of
the Persian Gulf Veterans Coordinating Board. But one hypothesis elicits even
his respect. "The one argument that does deserve further study [concerns]
the combination of pyridostigmine bromide with pesticides."
Pyridostigmine bromide--or PB--is a drug usually prescribed to sufferers of
myasthenia gravis, a degenerative nerve disease. But animal experiments have
shown that pretreatment with PB may also provide some protection from the nerve
gas soman. The U.S. military therefore gave the drug to most Americans in the
Gulf. Darrell Clark, for instance, took it, and Richard Arnold--now racked with
chronic joint pain--probably did: "I took everything the First Cavalry
"Everything we hoped for just crashed. Why us? Why
Cedrick?" -BIANCA MILLER
His five-year-old sister, Larissa, must be careful when they play together: A
fall could dislodge the shunt in his head and lead to brain damage. Cedrick's
handicaps have left his parents, Steve and Bianca, terrified of having more
The Defense Department may have been taking a big chance with PB. In
earlier, small-scale safety trials, Air Force pilots had reported serious side
effects, including impaired breathing, vision, stamina and short-term memory.
(Many soldiers would experience such symptoms during the Gulf War.) Even more
alarming, PB was known to worsen the effects of some kinds of nerve gas.
Nonetheless, as war threatened, the Pentagon persuaded the Food and Drug
Administration to waive its prohibition on testing a drug for new purposes
without the subjects' "informed consent." FDA deputy commissioner Mary
Pendergast defends that ruling: "You can't have your troops being the ones
to decide whether they'll take some step to keep themselves healthy."
If PB did cause lasting problems, the reason could be the way it interacts with
bug spray. In 1993, James Moss, a scientist with the U.S. Department of
Agriculture, found that when cockroaches are exposed to PB along with the common
insect repellent DEET--used in the Gulf--the toxicity of both chemicals is
multiplied. Moss says he pursued his experiments in spite of orders to stop. His
contract wasn't renewed when it expired last year, and the researcher claims he
was blackballed. (USDA Secretary Dan Glickman says Moss's "temporary
appointment" was up and Moss knew it.) Since Moss's study, two others--one
by the Pentagon itself, the second by Duke University--have found neural damage
in rats and chickens exposed to another chemical cocktail, this one a mixture of
PB, DEET and permethrin, an insecticide. Permethrin, however, was probably used
by no more than 5 percent of U.S. soldiers in the Gulf.
Pentagon officials deny that any PB-DEET mixture could have caused birth defects
in male Gulf vets' children. "I'm not aware that a male can be exposed to a
chemical agent, and then two years later his sperm creates a defect," says
Dr. Stephen Joseph, assistant secretary of defense for health affairs. But some
chemicals, such as mustard gas, have been shown to affect sperm production for
even longer periods. Clearly, further research is needed to determine whether a
PB-and-bug-spray combo can behave the same way.
rmy Sgt. Brad Minns is pretty sure he didn't take PB, but he did take a vaccine
meant to save his life if Iraq resorted to germ warfare. He fears that this
medication caused his chronic fatigue--and that his Gulf War service ultimately
blighted his baby's life at the root.
In their bungalow at Fort Meade, Md., Brad and his wife, Marilyn, list their
son's tribulations. Casey was born with Goldenhar's syndrome, characterized by a
lopsided head and spine. His left ear was missing, his digestive tract
disconnected. Trying to repair his scrambled innards, surgeons at Walter Reed
Army Medical Center damaged his vocal cords and colon, say Brad and Marilyn.
(Ben Smith, a spokesman for Walter Reed, says, "A claim has been filed by
the family, and until it's resolved [the case] is in the hands of the
lawyers.") Now 26 months old, Casey speaks in sign language. His parents
feed him and remove his wastes through holes in his belly. Otherwise, he's a
regular kid, tearing about the sparsely decorated room, shoving pens, books,
scraps of paper into his mouth. Marilyn follows, tugging them out again.
- DR. SHARON COOPER, Womack Army Medical Center
"A lot of parents have anxieties about coming forth"
Born with organs out of place, he suffered further damage in surgery, says
his father, Brad. Now Casey's chest has stopped growing, leading to fears that
he may need an operation at some point to preserve function in his lungs.
"He's a little terror," says Brad, with the weariest of smiles.
A military policeman posted mainly at an airfield in Saudi Arabia, Brad, along
with 150,000 other American soldiers, took a vaccine--on his commander's
orders--against weapon-borne anthrax. A second vaccine, against botulism, was
administered to 8,000 soldiers. A staff report issued last December by the
Senate Committee on Veterans' Affairs concluded that "Persian Gulf veterans
were . . . ordered under threat of Article 15 or court-martial, to discuss their
vaccinations with no one, not even with medical professionals needing the
information to treat adverse reactions from the vaccine." The Senate report
noted that the particular botulinum toxoid issued "was not approved by
FDA." Other details from the survey: Of responding veterans who had taken
the anthrax vaccine, 85 percent were told they could not refuse it, and 43
percent experienced immediate side effects. Only one fourth of the women to whom
it was administered were warned of any risks to pregnancy. Of all responding
personnel who had taken the antibotulism medicine, 88 percent were told not to
turn it down and 35 percent suffered side effects. None of the women given
botulinum toxoid were told of pregnancy risks. "Anthrax vaccine should
continue to be considered as a potential cause for undiagnosed illnesses in
Persian Gulf military personnel," said the report in one of its summations.
And in another: "[The botulism vaccine's] safety remains unknown."
In a conference room at the Womack Army Medical Center in Fort Bragg, N.C.,
Melanie Ayers is addressing a support group for parents of Gulf War babies.
"Sometimes," she says, "I wish I'd gone into a corner and stayed
naive." Pixie-faced and preternaturally energetic, Ayers, 30, dates her
loss of innocence to November 1993, when her five-month-old son died of
congestive heart failure. Michael, who was conceived after his father, Glenn,
returned from action as a battery commander in the Gulf, sweated
constantly--until the night he woke up screaming, his arms and legs ice-cold.
His previously undetected mitral-valve defect cost him his life.
After Michael's death, Melanie sealed off his bedroom; she tried to close
herself off as well. But soon she began to encounter "a shocking
number" of other parents whose post-Gulf War children had been born with
abnormalities. All of them were desperate to know what had gone wrong and
whether they would ever again be able to bear healthy babies. With Kim Sullivan,
an artillery captain's wife whose infant son, Matthew, had died of a rare liver
cancer, Melanie founded an informal network of fellow sufferers.
Surrounded by framed photos of decorated medics and nurses, a dozen of those
moms and dads have come to share their worries, anger and grief. Kim is here. So
is Connie Hanson, wife of an Army sergeant; her son, Jayce, was born with
multiple deformities. Army Sgt. John Mabus has brought along his babies, Zachary
and Andrew, who suffer from an incomplete fusion of the skull. The people in
this room have turned to one another because they can no longer rely upon the
"They told us that if she lived the next 36 hours, she'd
have a pretty good chance of surviving. Those 36 hours. . . . It's kind of
indescribable what that's like." -LISA ARNOLD
Spina bifida cripples her legs. Her upper body is so weak that she can't push
herself in a wheelchair on carpeting. To strengthen her bones, she spends hours
in a contraption that holds her upright. Brothers Nathan (in tree) and Joey,
both born before the war, are healthy. "The boys care a lot about
Lea'," says her mom, Lisa. "Every time she goes to the hospital, their
"A lot of the parents have had anxieties about coming forth with their
concerns," says Dr. Sharon Cooper, the Womack Center's director of
pediatrics. Cooper is one military official who, rather than taking an
adversarial stance, is dedicated to helping Gulf veterans and their families
cope. Many vets speak of Army physicians who dismiss physical ailments as
symptoms of stress, even as fabrication. They cite an internal report by the
National Guard, leaked to the press last year, which revealed that hundreds of
Gulf vets had been wrongly discharged as a money-saving measure--let go with a
supposedly clean bill of health, although ongoing medical problems entitled them
to remain in the service for treatment. A second report, issued by the GAO
earlier this year, scores the Veterans Administration for being routinely tardy
with its payments to ailing vets. "When you send a veteran off to do
dangerous work, I think his complaints deserve respect," says West Virginia
Sen. Jay Rockefeller. "The phrase I've used is 'reckless disregard.'
There's a stark pattern of Defense Department recklessness."
For vets with afflicted babies, the runaround can be just as bad. Military
doctors often ignore signs of inborn disorders, say Gulf War parents, or refuse
to discuss them frankly. And when they do talk about birth defects, the
doctors--and Pentagon bureaucrats--are quick to cite a statistic that drives
these parents wild: At least 3 percent of American babies are born with
abnormalities. To which Melanie Ayers responds: "I'd like to put my child's
picture in front of them and say, 'Glance at that once in a while to make sure
you're telling me the truth.'"
"There's a stark pattern of Defense Department recklessness." -SEN.JAY
"Just about our whole world is centered around Lea'," says Lisa
Arnold. Huge medical bills--and the unwillingness of insurance companies to
cover preexisting conditions-- force the family to live in poverty to qualify
ndeed, the truth may not be as simple as "at least three percent"
implies. On a blazing Saturday afternoon, flanked by his parents, three-year-old
Cedrick Miller is dangling his feet in an apartment-complex pool in San Antonio.
Flossy-haired and shy, he looks younger than his age. Cedrick was born with his
trachea and esophagus fused; despite surgery, his inability to hold down solid
food has kept his weight to 20 pounds. His internal problems include
hydrocephalus and a heart in the wrong place. But it's clear from one look that
something else is awry.
Cedrick suffers, like Casey Minns, from Goldenhar's syndrome. The left half of
his face is shrunken, with a missing ear and a blind eye. His mother, Bianca,
says that when a prenatal exam showed the defects, "everything we'd hoped
for just crashed. What had Cedrick done to deserve this?"
Steve Miller, a former Army medic, thinks chemicals damaged his sperm. He
believes statistical evidence is at hand. "With Goldenhar's," he says,
"we have clustering."
Clustering is the term epidemiologists use when an ailment strikes one
group of people more than others--and the phenomenon can be a key indicator that
something more than chance is causing birth defects. The Association of Birth
Defect Children says it has found the first cluster of defects in the offspring
of U.S. Gulf veterans: 10 babies with severe Goldenhar's syndrome, a condition
that usually strikes one in 26,000, according to ABDC executive director Betty
Mekdeci. (Another case has surfaced in Britain, where 600 vets complain of
Gulf-related illness.) The ABDC, which has gathered data on 163 ailing Gulf War
babies so far, is tracking four more possible clusters--of victims of
hypoplastic left heart syndrome, of atrial-septal heart defect, of microcephaly
and of immune-system deficiencies. Significantly, not one of the parents in the
ABDC survey has a family history of these types of birth defects. Or as Mekdeci
puts it, "There have been no relatives with funny ears."
The difficulty in proving conclusively whether clusters are occurring is that no
one--not Mekdeci, not the Pentagon--knows how many babies have been born to Gulf
vets. The Defense Department's own survey of 40,000 birth outcomes, initial
results of which are due in late October, is the largest study yet, but far from
complete since it relies on data only from military hospitals. The Pentagon's
Dr. Joseph says the forthcoming report will include "by far the best and
most comprehensive information available." Maybe it will, but many still
question whether Defense Department scientists are really seeking the hard
answers. Earlier this year Dr. Joseph told LIFE that, although trained as a
pediatrician, he was entirely unfamiliar with "Goldhavers or Gold
Heart--whatever." It's precisely that kind of response that enrages
veterans with afflicted babies.
Along with the ABDC and Defense Department surveys, more than 30 other studies
of Gulf vets and their children are under way. One that is no longer ongoing, by
the Senate Banking Committee, folded last year when committee chair Don Riegle
retired. Of the 400 sick vets who had already answered committee inquiries, a
startling 65 percent reported birth defects or immune-system problems in
children conceived after the war.
"A millionaire couldn't care for these kids." -LISA ARNOLD
An airplane swing sets Jayce free.
Although Riegle is gone, there are a few others in Washington fighting for
afflicted Gulf War families. One is Rockefeller, but in recent months he has
lost clout. After last year's GOP landslide, he was ousted as chairman of the
Veterans' Affairs Committee, which produced the 1994 report on PB and vaccine
use in the Gulf. The new chair, Alan Simpson (R--Wyo.), plans no action
"until the hard science is in," says an aide.
Then there is Hillary Rodham Clinton, the point person for an administration
that, by pushing through a 1994 law mandating benefits for vets with symptoms,
has cast itself as a friend of Gulf War syndrome sufferers. On August 14, at the
opening session of the presidential advisory committee on the syndrome, she
declared, "Just as we relied on our troops when they were sent to war, we
must assure them that they can rely on us now."
Whatever White House fact finders discover, there's no guarantee that Gulf War
babies will get government help. As it stands, a soldier's children receive free
medical care only as long as a parent remains in the service. For parents who
return to civilian life, the going can be grim. Moreover, the government's
record on earlier military health grievances is hardly reassuring. Soldiers
unwittingly used in radiation experiments in the 1950s, for instance, had to
fight the VA for compensation until the 1980s. And Vietnam veterans claim that
scientists manipulated evidence to hide the ravages of Agent Orange. "The
CDC actually skewed the data," says retired Navy Adm. Elmo Zumwalt Jr., who
blames his son's fatal cancer on the defoliant. Vietnam vets won a $180 million
settlement from Agent Orange manufacturers, but not until 1984. Gulf vets, says
Zumwalt, "need to keep the pressure on, because in the case of Agent
Orange--and I'm sure it'll occur with Desert Storm syndrome--the companies who
stand to be found liable for any harmful effects will be in there
A few Desert Storm families have been relatively lucky--the Clarks, for
instance, whose daughter has been granted free treatment through November of
1996, thanks to an Air Force doctor who recommended her as a subject for study.
But others have been denied insurance coverage for "preexisting
conditions." They are being driven into poverty; some join the welfare line
so Medicaid will help with the impossible burden. "You could be a
millionaire, and there's no way you could take care of one of these
children," says Lisa Arnold.
Betty Mekdeci thinks Congress should set up a special insurance fund for
families like the Arnolds. "The very least we owe these folks is to provide
them with a guarantee of care," she says. "I'd be glad to pay the
extra taxes to do it.""
"I'm angry, frustrated and sad," says Darrell Clark. "It's
unfortunate that no one will speak up and say, 'Maybe we made a mistake. How can
we help you get on with your lives?'"
acked into an airplane-shaped swing at his grandmother's house in
Charlottesville, Va., Jayce Hanson is getting on with his life as best he can. A
cherubic, rambunctious blond, he's the unofficial poster boy of the Gulf War
babies--seen by millions in People. Jayce is the center of attention
here, too, as his father pushes the swing and a photographer snaps his picture.
But since his last major public appearance, he has undergone a change: His lower
legs are missing.
Now three years old, Jayce was born with hands and feet attached to twisted
stumps. He also had a hole in his heart, a hemophilia-like blood condition and
underdeveloped ear canals. Doctors recently amputated his legs at the knees to
make it easier to fit him with prosthetics. "He'll say once in a while, 'My
feet are gone,'" says his mother, Connie, "but he's been a real
During the war, Paul Hanson breathed heavy oil smoke; he stopped taking PB pills
early, because they made him dizzy. Now he suffers regularly from headaches,
nausea, tightness in the chest. Still, he is optimistic for his son.
"Jayce is very bright," says Paul. "He doesn't realize his
limitations. But when he grows up and says, 'Why am I not like everybody else?'
we'd like to be able to explain it to him."