An Enemy Within
updated 01/30/1995 AT 01:00 AM EST
•originally published 01/30/1995 AT 01:00 AM EST
Jayce has been diagnosed with a genetic disorder known as TAR syndrome. Typically passed down by both parents, TAR stands for thrombocytopenia (a reduction in the number of platelet cells in the blood) and the absence of radius, or bone, in the arms or legs. Jayce has one of the more severe forms of this rare condition and a hole in his heart. Jayce's sister Amy, 4, had been born without the disorder.
But when Jayce was born so profoundly handicapped, surprised physicians asked his mother whether she had been exposed to any chemicals. "I said, 'No,' " recalls Connie Hanson, 30, a tall Virginian with a gentle kind of grace, " 'but my husband was—in the Gulf War.' "
Jayce's father, Paul, 31, an Army sergeant now based at Fort Bragg, N.C., was a combat engineer stationed along the Kuwaiti border with Iraq. Now he shares a common bond with dozens of other parents who served in the Gulf War. Though the parents themselves have shown no symptoms of what has come to be known as Gulf War syndrome, they have had children with profound afflictions and nearly surrealistic deformities. So far no one has been able to prove—or disprove—whether the war was some-' how to blame. But activists suspect that oil-fire fumes or experimental drugs like pyridostigmine bromide (a nerve-gas antidote known as PB, which was given to soldiers) might have caused genetic mutations in soldiers' reproductive systems that may cause birth defects.
Like many of his counterparts, Paul Hanson has shown no GW symptoms—none of the inexplicable diarrhea, chronic fatigue, headaches, joint pain, rashes, memory loss or tremors. Moreover he and his wife are reluctant to blame his tour for Jayce's defects—at least before all the facts are in.
"I want Jayce to look back and be very happy that his daddy served in Desert Storm," Connie says. Still, she concedes, "I would just like more research to be done, for the sake of future wars and for Jayce. So he knows whether he could have a child or not." Beyond that, she says with stoic resolve, "the government can't give him back his arms and legs. You just have to deal with it."
Other parents, though, feel certain that the Gulf War somehow left their children deformed. One-year-old Amanda Miedona of Chicago Ridge, Ill., suffers from microcephaly. Her head, which measures about 12¼ inches in circumference, is about one-third smaller than normal. "I can palm it," says her father, Troy, 24. "It's like holding a softball."
For her mother, Amanda's birth was a shock. "I thought, 'My God, is she ugly!' " recalls Michele Miedona, 22. "I kept calling her Troll Baby. She had so much black hair, and it just stuck straight up. Her eyes were on top of her head. Now that her head has rounded out and grown, she has beautiful features."
According to Dr. Peter Huttenlocher, a pediatric neurologist at the University of Chicago Medical Center who examined Amanda, her defect is a consequence of Seckel syndrome—a rare recessive genetic disorder that, if carried by both parents, commonly results in dwarfism or retardation. The Miedonas will undergo genetic tests to determine if they could be carriers. But Michele and Troy have other ideas about Amanda's condition. "There is no doubt that it was caused by the Gulf War," says Troy, now a chemical-company production operator.
Miedona served in the gulf as a helicopter crew chief and took PB pills, as well as a variety of injections, none of which fazed him at the time. "We did what we had to do," he says. But from the time he returned to the U.S. in February 1992, Miedona found himself ill almost constantly. "I vomited a couple of times a day for six months," he says. "I gained and lost 20 pounds in two days." Though he no longer vomits, his weight still fluctuates wildly, and he is still plagued with constant nausea.
In September 1992, eight months after his return, he and Michele married, and by the following May, Michele was pregnant. It was after a second ultrasound that her obstetrician told her about Amanda's small head, adding that only a chromosome-mapping test could determine whether the child would survive beyond birth. "My face turned beet-red, and my heart was beating louder than the doctor's talking," Michele remembers. "I was beyond crying."
Preparing for the worst, Troy suggested registering Amanda as a potential organ donor. But when the chromosome mapping showed no irregularity, Michele says, "I told the doctor, 'I don't want her organs promised to anyone because I think she is going to live.' "
And she did. But if Dr. Huttenlocher has it right, Amanda's future is fraught with obstacles. The doctor has predicted that she will be hyperactive, slow in learning and in developing motor skills and that she might grow to be only three or four feet tall. Undaunted, the Miedonas have worked strenuously, with some early success, to help develop her dexterity. "We are attached to her in all meanings of the word," says Michele.
Adding to the Miedonas' concern is a recent blizzard of conflicting reports on GWS. A Pentagon study led by Nobel laureate geneticist Joshua Lederberg found "no scientific or medical evidence" that U.S. servicemen and women were exposed to any Iraqi chemical or biological agents in the Persian Gulf. And Dr. Gareth Green of Harvard University, who chaired a National Institutes of Health panel on the Persian Gulf War's effect on soldiers' health, concurs. "We didn't find data to support any direct connection between the veterans' wartime experience and health effects on them and their children," he says, but the panel recommended that additional studies be conducted into the various afflictions. Moreover, Dr. Robert Roswell, head of the Persian Gulf Veterans Coordinating Board, says that the 3.3 percent incidence of birth defects among 29,000 vets surveyed is similar to those found in the general population.
But a report issued last month by the U.S. Senate Committee on Veterans' Affairs, then chaired by Sen. Jay Rockefeller (D-W.Va.), counters that experimental drugs—chiefly PB tablets and vaccines—were given to soldiers with no caveats about side effects. Such medications, the report asserted, might well have depressed immune systems and wrought genetic havoc.
Among the 150 veterans who were interviewed by the Rockefeller committee was Steve Miller, 35, a U.S. Army nurse at Fort Sam Houston, Texas. Miller's son Cedrick is a victim of Goldenhar syndrome, a rare and sometimes fatal disorder. Cedrick also has an extra chromosome. As a result, he was born hydrocephalic, with excess cerebrospinal fluid pressing dangerously on his brain. His spine was abnormally curved, and his left ear and eye were missing. The left side of his jaw was smaller than the right, and he had only partial use of his thumbs. Also, Cedrick's heart was on the wrong side of his body—and his trachea and esophagus were attached to each other, which would have caused severe eating and breathing problems if the condition had been left uncorrected. "I wasn't sure if I should hope Cedrick lived or mercifully died," says his mother, Bianca, 25.
Both Miller and his wife have normal chromosomes—and have, in addition to Cedrick, a perfectly normal daughter, Larissa, now almost 5. Neither Steve nor Bianca used drugs nor had they routinely been exposed to toxic chemicals—with one exception. While serving as a medic in the Gulf War, Miller had taken a number of PB tablets. "The Army did not tell the troops that they were experimental," he says of the drugs. He believes the military had an obligation to do so. "I accept that I can get shot," he says. "I enlisted. But Cedrick and Bianca didn't."
Cedrick, now 3 and only 20 lbs., has made remarkable progress. Surgery freed his windpipe and a shunt was inserted in his brain to drain excess fluid into his lower body. On the bleaker side, he has had enormous difficulty keeping down his food. It took Bianca a year and a half to get him to swallow a tablespoon of yogurt, and as an infant he needed to take most of his meals through a feeding tube. Cedrick will need at least five more corrective operations. Understandably, the Millers believe that the government should compensate parents for the care of GWS children—though the government has not conceded that such children exist. "If someone had sat down with us when Cedrick was born and said, 'We are really sorry about what happened, and the government wants to correct it,' " Steve says, "we would have been perfectly happy. But it has been flat denials all the way."
For the veterans and their families, perhaps the most frightening aspect of what has happened to them and their children is not knowing why it has happened. "They need answers now," says Betty Mekdeci, founder and director of the Association of Birth Defect Children in Orlando, whose organization is surveying affected Gulf War families for defects their kids have in common. "They have to know whether it is safe for them to have more children."
A similar conviction roused Melanie Avers of Fort Bragg to activism. Her 5-month-old son, Michael, was dark-haired, like her husband, Glenn, and, though sickly, appeared otherwise normal. But one November night at around 3:00 a.m., his handsome features contorted as he awoke with a cry. Though his legs and arms were cold, the rest of his body was soaked in sweat. Minutes later, in his parents' car on the way to the hospital, he died.
Michael's killer, an autopsy showed, was an undiagnosed heart deformity, which had caused the mitral valve to swell to 10 times normal size. The boy was one of 14 children of Gulf War veterans—10 of them at Fort Bragg—who have died in infancy of various causes.
"The government keeps talking about how 'mysterious' this is—and it's a load of rubbish," says British-born Melanie, 29. "If this were E. coli or something, this place would be a federal disaster area. But we now have 14 dead babies—and what are they doing?"
Poised and articulate, the homemaker is now a zealous crusader. As one of the leaders of an informal "Gulf War babies" information network, she has spent hours fielding phone calls and letters from veterans and their families. Most have agonizing stories to tell: of the stillborn baby whose stomach and esophagus were not connected; of a girl born with red and yellow lesions covering her body; and of little Matthew Sullivan, 10 months old, who died in his crib of primary liver cancer, a disease more often associated with aging alcoholics. "All these kids had in common," Ayers says, "was a daddy who went to the gulf."
Glenn Ayers, 33, an Army major now stationed at Fort Bragg, was a battery commander who received a 10-week dosage of PB pills. Though he has displayed none of the common GWS symptoms, his wife suspects he may be harboring toxins in his body. "The obvious thing is to test my husband for exposure to radiation and chemicals," says Melanie. "If there's something wrong because of the war, don't you think we should know? And if it's genetic, there's even more reason to know, before we try having more children." Married in 1987 after meeting in Korea, where Glenn was stationed and Melanie was touring with a British dance company, the Ayerses have one surviving child, Rachel, 3, who is not untouched by the grief around her. "She and her friends play dolls—but all the 'babies' die," Melanie says sadly. "They think that's what babies do."
GIOVANNA BREU in San Antonio and Chicago Heights and KATE McKENNA in Washington and Fort Bragg