And now:Ish <[EMAIL PROTECTED]> writes: Shoalwater tribe sounds alarm over fetal deaths P-I Plus: Seattle & Northwest 13 pregnancies in 2 years; 1 baby survives Monday, February 22, 1999 By PAUL SHUKOVSKY <[EMAIL PROTECTED]> SEATTLE POST-INTELLIGENCER REPORTER TOKELAND -- Something is killing the future of the tiny Shoalwater Bay Tribe. A generation is being wiped out in the womb, and nobody knows why. Among the southwest Washington tribe, 10 of 19 pregnancies from 1988 through 1992 ended in miscarriage, ectopic pregnancy, stillbirth or the death of the baby within a year of birth. Of 13 pregnancies in 1997 and 1998, only one baby is alive today. It is a statistic so startling that last month, a team of investigators from the national Centers for Disease Control and Prevention in Atlanta descended on this southwest Washington reservation, where the Tokeland Peninsula points into the Pacific. Part of the team's mission is to determine whether the miscarriages and other complications of pregnancy are limited to the reservation or also involve non-Indian residents of the region. It's a recurrence of a scourge that tribal members thought was behind them. In 1992, the tribe hit the panic button when it realized that 10 of 19 pregnancies since 1988 had ended in miscarriage, ectopic pregnancy, stillbirth or the death of the baby within a year of birth. Although scientists and physicians led by the federal Indian Health Service never pinpointed a cause, people set aside their concerns when four apparently healthy babies were born from 1993 through 1996. Now the nightmare is back. "If our people cannot keep their babies, our way of life here will die," said Herbert "Ike" Whitish, chairman of the impoverished, 200-member tribe. "Most of them would have grown up to be my great- nephews and -nieces -- the future of the tribe. It just feels like if something isn't done, that this place will cease to be." In the past two years, two women on the reservation have suffered molar pregnancies, a condition in which the embryo dies quickly but a group of precancerous cells continues to grow in the uterus, making the woman think she is still pregnant. The condition is so rare that having two cases in a tiny community "is clearly worrisome," said Dr. William Freeman, director of research for the Indian Health Service in Albuquerque, N.M. Last year, there were seven miscarriages, one molar pregnancy and one successful birth among the reservation community. In 1997, there were two miscarriages, one molar pregnancy and one other fetal death. This year, there has been one miscarriage and one baby whose 10-pound birth weight could indicate problems such as gestational diabetes. Typically, 30 percent to 40 percent of all pregnancies end in miscarriage. In Tokeland, tribal health department officers Gale Taylor and Kim Zillyett spend many hours reviewing old charts and planning how to improve medical surveillance of the tribe. It's an especially tough task for Zillyett, who as one of those who recently miscarried, is reminded of her loss at work every day. "I'm one of those statistics, and I'm scared to death to try to have another baby," she said. Zillyett describes herself and her husband as working people who take care of themselves and receive good medical care. "Three days before it happened, we saw the heartbeat," she said. "It doesn't make sense. Every single day since it happened, working here is a constant reminder that I should be six months pregnant." Now another member of her family is pregnant. "It's going to be hard when she has her baby, because they should be little cousins together," Zillyett said. Picture | Parents Bonny and Shane Thomas cuddle 5-month-old Derek, Parents | the only surviving baby of 13 pregnancies in 1997 and & baby. | 1998 among the tiny Shoalwater Bay Tribe. Anthony Bolante/P-I Last month, Whitish sent a letter to members of the tribe that began: "Some years ago, the Shoalwater Bay Tribe experienced a dark time in its history -- the unprecedented high rate of infant deaths. It saddens me to inform you that it appears that the problem has not been overcome." The letter drew no response from tribal members. "People could not stand to confront the tragedy again," Taylor said. The next day, at the request of the tribe and the Pacific County Commission, a four-member CDC team arrived on the reservation. When the team got there, "The tension was so thick you could cut it with a knife," Zillyett said. Taylor said she "could see how hard this had hit the tribe. You could see the pain of having to face it again." Congress responded to the concerns in the early 1990s by paying for construction of a health clinic staffed by a physician. Federal and state agencies conducted studies to look for chemical contaminants. They found high levels of pesticides in nearby cranberry bogs, but made no direct connection to the fetal deaths. For a while, many women of the tribe were afraid to become pregnant. But when four healthy babies were born from 1993 to 1996, tribal members put the bad times behind them. So when the CDC team arrived last month, they were greeted with gratitude as well as alarm. The CDC doctors gave three briefings to tribal members on molar pregnancies and miscarriages. "It was very helpful and healing for the people around here to actually go in and face their demon," Taylor said. Whitish's wife, Teresa, a member of the Tulalip Tribe, believed the Shoalwaters needed another kind of help to combat hopelessness and despair. She called on a shaman, who traveled to Tokeland with spirit boards, a devining device phonetically pronounced squi-day-lich. When the shaman read the boards, "The spirits revealed to him that death was coming down in the form of rain," Teresa Whitish said. While no one else has pointed to rain as a possible cause, experts from the Environmental Protection Agency and the state Department of Ecology have studied the area around the reservation for pesticide contamination. Possible sources of pollutants surround the Shoalwater Reservation, including an old military-weapons site that is now a municipal dump. In addition, pesticides have been sprayed on nearby commercial forest lands and cranberry bogs, and on Willapa Bay to kill aquatic weeds and oyster parasites. Officials have not identified any of these sources as responsible for the deaths, and say making such a connection would be difficult. "If they can't tell us what it is, we're looking for someone to tell us what it's not," Ike Whitish said. "I'd like to hear that our water is safe, that our land is safe, so we can have some comfort to stay where we are at." Reports released in 1997 by the EPA and the state Ecology Department in response to the fetal deaths, while not exhaustive, found only one unambiguous problem. There are high levels of pesticide contamination in the drainage waters of the cranberry bogs. The Ecology Department has worked with growers for years on the problem. But there hasn't been much progress. Levels of three pesticides in the cranberry drainage ditches -- guthion, lorsban and diazinon -- violate federal Clean Water Act standards and, according to the DOE report, can kill aquatic life. Gary Burns, the tribe's environmental program manager, says even though studies have linked pesticides to reproductive problems in animals, it would be difficult to connect the Shoalwater Tribe's fetal deaths with the pesticide use. "If there is an environmental link to this, we probably won't make it," Burns said. Members of an advisory board convened to help the tribe -- toxicologists, epidemiologists and physicians from federal and state government -- agree that linking the environment and the reproductive problems would be difficult. But they say the tribe should do whatever is possible to minimize its exposure to contaminants. Dr. Roger Rochat, an epidemiologist with the CDC's Division of Reproductive Health and a member of the team that visited the reservation, said last week from Atlanta that at this early stage, the team is not even looking for any tie between the environment and the fetal deaths. Rather, CDC scientists are gathering information on pregnancies in the area to determine whether the miscarriages and molar pregnancies are simply random or something more sinister. But at least one expert thinks toxins could play a role. The loss of genetic material in human ova that leads to molar pregnancies could be caused by environmental factors, said Dr. Kurt Benirschke, a nationally recognized expert on molar pregnancies and diseases of the placenta. "The real problem is to understand why there are eggs that don't have a nucleus," he said. "People have considered the possibility that this . . . is an environmental feature. I think that it is a good possibility." Authorities also are concerned that a cluster of molar pregnancies might extend beyond the reservation. When CDC scientists requested documentation of all molar pregnancies and similar diagnoses from pathology labs in the region, they learned that roughly 100 were reported during 1997 and 1998. If all those were molar pregnancies, it would be roughly the number one might expect for the entire state. Benirschke says the U.S. incidence of molar pregnancies is one in 2,000 pregnancies. The CDC epidemiologists use a figure of one in 1,000 pregnancies. Washington state has about 55,000 births a year. Benirschke says the incidence of molar pregnancies varies by race and runs much higher among Asians. In Hong Kong, it is 1 in 242; in Mexico, 1 in 200; in Sweden, 1 in 1,500. He called it a regular occurrence in Japanese obstetric wards. But he knows of no data on the incidence among Native Americans. One problem is it is unclear what region the pathology reports encompass. If the 100 instances are confirmed as molar pregnancies that occurred in just a few counties in southwest Washington, authorities would consider that evidence of a major problem. But if many of the reports are incorrect, or the area covers much of the state and into Oregon, there may be no problem at all. That's what the CDC team wants to clarify. Pacific County Health Department Director Kathy Spoor has been deeply involved in collecting data for the CDC epidemiologists. And she plans to improve medical surveillance to see whether the reproductive problems run countywide. There is an anecdotal sense that miscarriages have occurred at a high rate in the county, she said. But until now, such data have not been collected. Most miscarriages are not reported because state law does not require it. At a Feb. 5 meeting in SeaTac, experts from the CDC, the Indian Health Service, the state Health Department, the EPA and the Pacific County Health Department met with tribal leaders to address concerns. As they discussed topics such as medical monitoring of women of child-bearing age and preserving tissue samples from miscarriages, tribal council member Lynn Clark responded by sharing the tribe's sorrow. "The whole community was suffering from a broken heart," Clark said, recalling the first time the Shoalwaters faced these concerns. "I hate to get back to it again, because it just opens up such a big, huge void. It was too overwhelming. I can't do it. That's what you guys are going to help us do -- move on." Whitish, who rarely betrays emotion, winced as he heard Clark's palpable pain. He said: "We just can't sit and let things go on as they are and hope they get better. If we are going to pass out of existence, at least we want to go out fighting. That's the way our ancestors did it. We want some truth. We want people to look at the data and tell us what it means." 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