Unraveling Hmong mystery
Peg Meier, Star Tribune
August 21, 2004 HMOVAR0821
When Hmong people first moved from Southeast Asia to the Twin Cities a generation ago, they had a saying:
"Every Hmong housewife must know CPR and sleep lightly beside her husband."
That's because Hmong men in America were dying -- mysteriously -- in their beds, at night, in their sleep. Apparently healthy, most between the ages of 25 and 44, these men would be sleeping peacefully. They would gasp or gurgle and be dead in only a minute or two. Sometimes the deaths were witnessed by family members, but most victims were found unresponsive and could not be revived.
Some Hmong men set their alarms to ring every half-hour during the night, just to be sure they were still alive.
A 30-year-old St. Paul man named Ma Thao told a reporter in 1983 that he was too terrified to sleep. He spoke in simple English, slowly, quietly and with dignity. He had seen much fighting when he was a truck driver for the U.S. Army in Laos, he said. Yet there he could cope, and he slept hard through the night.
But, in America, he said, "I worry, and I cannot make my body to sleep." He forced himself to stay awake as late as he could, usually waking up in a sweat after only three or four hours. Fear of dying in his sleep was ruining his life, he said.
In the 1980s, at least 117 apparently healthy Southeast Asian refugees to the United States died mysteriously of what became known as SUNDS -- Sudden Unexplained Nocturnal Death Syndrome. But giving it a name didn't answer the question:
Why were apparently healthy Hmong men in America dying in their sleep?
Minnesota, with its large influx of Hmong refugees, was believed to have the nation's second-highest number of the deaths. Fifteen cases were documented by 1984, according to a study conducted that year at what was then St. Paul-Ramsey Medical Center. More deaths followed. Cases tapered off in the late 1980s, and the last confirmed case here was in 1997.
But ... the mystery has resurfaced. Dr. Xuoa Thao, 42, a St. Paul family practice doctor with mostly Hmong patients, said that to the Hmong community, SUNDS is over. "I've been here nine years and have yet to see one case," Thao said. "Nobody even talks about it anymore."
Yet Dr. Neal Holtan, a Minneapolis doctor who became an international expert on SUNDS, is concerned. ...
Holtan worked at the Model Cities Clinic when the Hmong began arriving in about 1977. He remembers the first time he heard about SUNDS. One of his patients was a woman whose husband was a strong man in his 30s.
"She woke up and heard him moaning and gasping," Holtan said, "and he was dead - that fast."
Minnesota law stipulates that in cases of unexpected and unexplained death, autopsies must be performed. Hmong people didn't take kindly to autopsies, which are a deep violation of their traditional religion. Many felt a person was no longer "whole" if cut open, either during surgery or in an autopsy. However, the new widow was given no choice. An autopsy was conducted.
Surprisingly, the autopsy found nothing wrong.
"We couldn't figure out what it could possibly be," Holtan said. Not trauma, not an overdose, not significant heart or internal-organ abnormalities, not food poisoning, not suicide, not lead poisoning. ...
By 1984, the SUNDS death rate among Laotian immigrants ages 25 to 44 was huge -- equal to the four leading causes of death in all U.S. men of that age group.
Older Hmong refugees had one answer. They said that spirits in bad dreams sat on the sleeper's chest and caused breathing problems. The more anxious and depressed the person, the more likely the spirits were to come. Relocation to a new land with a new language, customs and climate was certainly enough to call the spirits.
That answer didn't suffice for Western medical experts. Studies were initiated nationwide. The first written report from the Centers for Disease Control came in 1981. It described the characteristics of 38 SUNDS victims, all Southeast Asian refugees:
None had complained of illness or discomfort before going to bed. All were considered by family members to have been in good health. Witnesses recalled no signs of pain or terrifying dreams. Victims were not known to have sleep apnea, epilepsy or allergies. Few were exposed to chemical warfare in Asia. They didn't use drugs or alcohol in the United States. Their final meals had not been unusual, and family members had eaten the same food. Risk was not greater in cold weather than in warm. In cases where there was a witness, death most often occurred three to five hours after the victim went to bed.
Autopsies continued to show nothing. Authorities were baffled. The Hmong community grew increasingly anxious.
Meanwhile, a Hmong immigrant chose SUNDS as the topic for his doctorate thesis in public health. Bruce Bliatout came to the United States in 1966 at age 17 ...
Bliatout looked at 45 SUNDS cases by 1982, an extremely high rate in a population of only 110,000 Hmong people in the United States. He wondered if Hmong culture or traditional beliefs had a role in SUNDS.
Hmong elders gave him many examples of mysterious deaths that they believed were caused by spirits. "They feel that in anger over not being worshiped properly, ancestors' spirits may withhold their protection and this allows ogres and evil spirits to kill their descendants," he wrote. But Bliatout found that religious preference was not an indicator of SUNDS. "Sudden nocturnal death struck both Christians and ancestor worshipers alike," he concluded. Neither did traditional health practices, such as using herbal medicines and powdered minerals, offer a clue.
He became fascinated with elderly Hmong people's stories of men in the mountains of Laos who had died without being sick. Some believed these men had been turned into tigers or other animals.
"It looked like a legend, like a story," Bliatout recently said, "but the time span was not that long ago." He knows personally of an apparent SUNDS case in a western province in Laos in the early 1970s. He had gone to school with the victim's younger brother. So he had no doubt Hmong men died of SUNDS in the old country.
Yet he, too, wondered if the stress of resettlement in America was a factor here.
Victims were young, but they tended to be heads of households, the people on whom an extended family depended, said Bliatout, now program manager for medical clinics in Portland, Ore. Language, climate, society, education, jobs, finances -- everything was different and challenging.
The search widened to many cultures. In Newfoundland, a folk tradition known as "The Old Hag" tells of terrified victims feeling pressed down upon the bed and strangled, often accompanied by feeling a "presence" in the room. The Inuits in Alaska tell a similar story of a Snow Witch.
Clearly, though, Southeast Asians have been particularly vulnerable. The disorder is called by descriptive terms: in Japan, pokkuri ("sudden unexplained death at night"); in Thailand, lai-tai ("died during sleep"), and, in a Philippine medical journal as long ago as 1917, as bangungut ("moaning and dying during sleep").
Some local legends in Southeast Asia said that "widow ghosts" take men away in the dead of night, so men were known to disguise themselves as women at bedtime to protect themselves.
... Holtan ... said, "Everyone was fascinated by this phenomenon and wondered if their own field of expertise had something to contribute. Like any good mystery, lots of people were trying to figure it out from many directions" -- psychology, nursing, anthropology, nutrition, sociology.
Holtan began looking into depression as a cause. St. Paul-Ramsey Medical Center found that more than 60 percent of Hmong refugee patients were experiencing some degree of depression and a third of those were clinically depressed. In another Minnesota study, depression was greater among employed people than unemployed and less in males who fished than those who did not. Yet not all SUNDS victims had been depressed, disturbed or agitated.
Studies failed to show a connection to chemical warfare poisons, such as Agent Orange, and autopsies did not show changes in the coronary arteries typical of heart disease or any indication of heart attacks.
What about sleep problems? Most victims died between midnight and 6 a.m. When the hands of clocks reached 3 a.m., anxiety rose. (The literature includes only one case much different in time of death. A Filipino immigrant to Hawaii expired mid-afternoon. He was a night watchman.) Sleep studies were conducted on healthy Hmong men who were relatives of victims; results were inconclusive.
... A study led by Holtan, who by then was known internationally for his SUNDS work, included a young man in the Twin Cities whose father died of the syndrome. His wife woke him 15 times a night after his father's death. "Now she only wakes me a few times a night to check me," he told researchers. "She insists that I not sleep on my back because my father died while sleeping on his back."
Some Hmong blamed SUNDS on immunizations given in the camp or poisoned food there. Here they were suspicious of the food, the cold weather, radiators, lack of ventilation, pollution, crowded living conditions and even soft beds. Some believed that American doctors already knew what caused the deaths -- but weren't telling. ...
The U.S. Centers for Disease Control determined that the deaths peaked in 1981, perhaps reflecting immigration trends. Refugee arrivals from Laos and Cambodia were at their height in 1980. Risk appeared highest the first two years a refugee was in the United States. ...
Dr. Andrew Baker, now Hennepin County medical examiner, said this summer that the county's most recent victim was a Southeast Asian man who was 46, older than most, when he died in 1997. The man had no medical history, was apparently in good health and died in the middle of the night. "There was nothing to explain his death," despite an investigation "about as thorough as they can get," Baker said. ...
Occasionally, articles appear in medical publications or the popular press, proclaiming a new theory or conclusion. In February, the New York Times Magazine ran a piece that lumped all the mysterious deaths of Southeast Asian men as "Brugada syndrome."
Named for one of the men who discovered it, it's a little-known sudden-death syndrome that can lead to arrhythmias and sudden collapse. In the late 1990s, an international consortium of scientists found a mutation of a gene that is known to influence the electric activity of the heart.
It's set off by a slow heartbeat, which would explain why the deaths occur at night. The only effective treatment is to detect the problem -- not easy --and implant a heart defibrillator. But if a genetic defect is the answer to SUNDS, why did deaths drop off in the 1980s? Holtan and others want to know the answer.
Bliatout, the Portland researcher, worries that stresses will mount for new Hmong residents. "They've been living in refugee camps for almost 30 years, they have no work, they haven't seen the world," he said. "They don't know the language, how to drive, how to look for a job." Relatives and social-services agencies will do their best to help them settle, he said, adding, "Hopefully this will eliminate SUNDS. But I don't know."
And what about Ma Thao, the 30-year-old Hmong man too scared to sleep in 1983? That's another mystery. The last that's known here is that he moved to La Crosse, Wis., a few years later. Hmong people here say they can't find a trace of him, dead or alive.
