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view Daniel Reno's sudden death in 1984 left his mother with many unanswered questions.
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A complete autopsy revealed no cause, and endless tears weren't going to bring him back.
His mother, Laura, struggled daily with how to respond when asked how many children she had and constantly blamed herself for Daniel's death.
"My first thought was what are people going to think of me because my baby is dead," she said.
"You can't go backwards," said Reno, of Grosse Pointe, Mich. "You can't have four children and then suddenly just say three."
Twenty years later, Reno still doesn't know what happened to her seemingly healthy 3-month-old.
And though research advancements have improved her understanding of sudden infant death syndrome, doctors and scientists still don't know how to prevent the deaths.
"Right now we don't know everything about it, so it's really hard to say if we remove all the triggers, then we'll get rid of it completely," said Marian Willinger, director of SIDS research for the National Institute of Child Health and Human Development.
Sudden infant death syndrome refers to those deaths that remain unexplained after all known causes have been ruled out through autopsy, investigation and medical history. It claims the lives of about 2,000 infants each year. Over the past 10 years, Wisconsin has had more than 1,000 confirmed cases.
According to the National Institute of Child Health and Human Development, the national SIDS rate has fallen almost 50% since the launch of the "Back to Sleep" campaign in 1994, which urges parents to put their infants to sleep on their backs, rather than on their stomachs.
Among African-Americans, the rate of SIDS has declined by almost 50% since the beginning of the campaign. However, black infants remain twice as likely to die of SIDS than white infants.
Researchers are edging closer to an answer to the unexplained deaths, and most agree that three things make it more likely to happen.
First, the infant must have an underlying abnormality, probably in the part of the brainstem that controls heart rate, respiration and other body regulations.
Second, the infant experiences subtle changes in sleep and wake patterns, breathing, heart rate, blood pressure and temperature in the first six months of life. This critical development period occurs in all infants during this time.
And third, stressors such as tummy sleeping, exposure to smoking or overheating tip the delicate balance from survival toward SIDS.
"Two to 4 months is when the nervous system develops," Willinger said. "And in a vulnerable baby, if they're sleeping on their tummy, they can't respond when their oxygen levels change."
Also, if a child's face is buried, the baby may overheat, causing additional stress to the cardiac and respiratory system, she said.
"There's no way to know" which infants are vulnerable, Willinger said, so "the best thing to do is eliminate the environmental triggers."
Still, this series of events, known as the "triple-risk" model, appears to be the most accepted theory about what leads to SIDS, she said.
"I wish we would have known then what we know now," said Reno, now the director of public relations for First Candle / SIDS Alliance. "He was on his tummy and covered with a blanket on a soft surface."
Twenty years ago, when Daniel died, the dangers of placing babies to sleep on their stomachs, placing pillows and stuffed animals in the crib, using soft bedding and bed-sharing weren't common knowledge.
And recently a team of researchers reported in the Archives of Pediatrics and Adolescent Medicine that infants who sleep on their backs are not at increased risk for health problems and that they are less likely to develop fevers, get stuffy noses or develop ear infections.
SIDS is a diagnosis of exclusion, which can increase the emotional distress for parents and families because their questions can't be answered.
"Investigating a child death is the toughest job we have," said Jeffrey Jentzen, Milwaukee County medical examiner. "We do a complete autopsy, a review of medical records and an investigation at the scene; and even with that we sometimes still can't tell specifically how a baby died."
Since 1987 the medical examiner's office and the Milwaukee Health Department have taken special interest in the deaths of any children 24 months and younger.
Of the approximately 1,250 cases, which include accidental deaths, about one-third of the children had a viral illness prior to death.
And last year a virus first identified in Japan was found in two Wisconsin infants who died suddenly.
"The role of the virus in the two crib deaths is still somewhat tenuous," said Gerald Sedmak, a virologist with the health department.
Sedmak said the Milwaukee lab often identifies viruses, the most common being the respiratory and gastrointestinal viruses known as adenovirus and enterovirus.
He said the discovery of human parechovirus-3, or HPEV-3, in the Wisconsin infants - a 4-week-old Appleton girl who died last September and a 4-month-old Fond du Lac girl who died in October - is intriguing, but it hasn't been found in any other cases.
"Just because a child tests positive for a virus doesn't mean that the virus caused the condition," Jentzen said. "We'll just have to wait to see how this plays out."
The search for viruses is only one on a long list of tests done before a child's death is labeled SIDS.
Health officials also examine pre-autopsy X-rays, growth charts, tissue samples, and eyes and neck for signs of hemorrhage that could indicate child abuse, as well as metabolic screenings and toxicology tests.
"I can guarantee we won't find something that we don't look for," Jentzen said. "So we try to find it by looking at everything possible."
A 1995 study on SIDS in the journal Science identified an abnormality in a part of the brain region known as the arcuate nucleus. The study showed that a chemical binding to a receptor was significantly decreased. The authors concluded that this abnormality probably hindered the infants' ability to respond to potentially life-threatening but frequent events that occur during sleep - such as rising carbon-dioxide levels or decreasing oxygen levels.
Two years later the same group identified an abnormality in another receptor inside the arcuate nucleus that was believed to control breathing, carbon-dioxide sensitivity and blood pressure. Those results, partially funded by the National Institute of Child Health and Human Development, were published in the Journal of Neuropathology and Experimental Neurology.
The role of vaccines has been ruled out after numerous studies found no direct link. Still, the controversy over vaccine safety remains because of a belief among some people that it leads to problems such as autism, SIDS and multiple sclerosis.
After the death of 2-month-old Jacob in 1999, Lydia Alves used to visit her son's grave every Sunday.
"At first it was good, because that's what I needed," she said. "But about Thursday, I would start getting really stressed because I knew Sunday was coming. And by the time I had gotten over the Sunday visit, it was Wednesday and time to do it all again."
Alves, of Kingston, Ontario, said she turned to friends in an online support group who helped her realize that not visiting the grave didn't mean she wasn't a good mom. They also helped her make sense of her emotions - guilt about her child's death and anger toward her husband.
But what she liked most about the women she met, she said, was that they were available around the clock.
Alves began another online support group called SIDS Families, which provides a place for relatives who may have known a baby who died.
"We've been there and know what it feels like to get up and suddenly there's no baby to feed, no diaper to change," she said. "Other (SIDS) moms know what it's like; professionals, unless they've experienced it, will never, ever know."
Although support groups have many benefits for people who are grieving, it's not the choice for every parent, said Anne Harvieux, program administrator for the Infant Death Center of Wisconsin.
"Some people are very stoic, some people cry, some people are very quiet, while others need to talk and still others are just angry," she said. "Everything is so individual, and you have to learn how to identify a family's particular needs."
Harvieux said it's important to remember that a sudden death of anyone, but especially a child, is difficult and that friends and relatives should take care to not cause the family any additional stress.
"I tell all SIDS parents to be patient and kind to themselves and to allow themselves time to grieve," Reno said. "It's a process and you never quite get over the death, you'll just learn to live with it."
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