Without a cause~~~~This first in a three part series examines the mystery surrounding Sudden Infant Death Syndrome.~~~~by Danielle Kaeding

The latest report from the National Center for Health Statistics reveals that nearly 2,300 infants die every year from Sudden Infant Death Syndrome--more commonly known as SIDS.

“Your mind just totally blanks out, and you go on autopilot.”

Debbie Jacobson of Duluth doesn’t remember driving to the hospital. Neither does her husband John. All they remember is the fear and panic and worry when they learned their two-month old son Brian had stopped breathing.

“In half an hour or forty-five minutes, they were working on him but couldn’t do anything for him," he said. "They came in and told us it was over.”

The Jacobson’s had lost their son to Sudden Infant Death Syndrome. SIDS is the leading cause of death in the United States among infants between one month and one year of age according to the Centers for Disease Control and Prevention (CDC). Yet, the cause of SIDS remains a mystery. Decades of study has failed to provide answers for parents like Debbie and John. But, researchers have identified risk factors that may contribute to SIDS deaths. St. Mary's Duluth Clinic Pediatrician Dr. Sharnell Valentine counsels new parents from northwestern Wisconsin and northeastern Minnesota about the risks.

“We recommend that infants sleep on their back. It’s called the Back-to-Sleep program," Valentine said. " In 2005, the American Academy of Pediatrics strengthened their recommendation for sleeping on the back such that they no longer say it’s okay to have a baby sleep on their side.”

The CDC’s website states the American Academy of Pediatrics “Back-to-Sleep” campaign contributed to a more than 50% drop in SIDS deaths nationwide since 1990. Wisconsin documented SIDS cases have followed a national decline according to state Infant Death Center Program Administrator Anne Harvieux.

"We believe that because people have been putting their babies on their backs to sleep, if you’re lying on your back and there is an issue with responding to an obstruction of your ability to breathe on your back that’s much less likely to happen,” said Harvieux.

Doctors began advising parents that placing babies to sleep on their backs, controlling room temperature, using proper bedding and having a smoke-free environment are ways to reduce the incidence of SIDS. However, with no definitive cause for SIDS, moms like Laureen Burgraff of Superior prefer to trust mother's intuition rather than rely on new medical research. Well aware of the risks, she puts her infant son Quade to sleep on his stomach.

“It seems that it’s such a broad label that any infant that dies at a young age they label as a SIDS death unless it’s something that’s you know a medial issue that they know of right away," Burgraff said. "So, they put out this blanket statement, and it’s scary. I still worry at night."

The state has changed how cases are classified in effort to pin down which infant deaths result from SIDS.

"There was a change in practice patterns on the part of medical examiners and forensic pathologists with some questioning whether the cause of death—SIDS—should be used when there’s co-sleeping or an un-safe sleep environment," said Harvieux.

Fewer than 40 SIDS cases out of 462 infant deaths occurred in Wisconsin during 2006. With so few cases to examine, Harvieux said it's difficult for researchers to pinpoint a cause.

“While it is devastating to families, the numbers are small. So you don’t have the volume that you would need to study that thoroughly on a local level.”

New research on the national and international level may be bringing the medical community closer to answers. But, while Debbie and John Jacobson hope for an answer someday, it won’t bring Brian back.

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Reducing the risk of SIDS

In part two of a three part series on Sudden Infant Death Syndrome, regulators of Wisconsin daycare centers struggle to enforce laws to prevent SIDS.

by Danielle Kaeding

Parents will do anything to keep their newborns healthy and safe. But, what do they do when they can't be there 24/7? With both parents often working outside the home, it's no surprise daycare centers like New Horizons Children's Center in Superior are caring for more infants.

Cindy Fennessey is the daycare provider at New Horizons. She's owned the center for three years. She and her staff must be trained in SIDS risk reduction when looking after infants.

“The teachers have to have had a course in infant-toddler before they can work in the classroom. I think it’s a 15-hour class—they do have a section of SIDS on there,” Fennessey said.

Superior mother of three Laureen Burgraff decided on New Horizons for her infant son Quade after hearing parents’ glowing remarks of the center.

“One of the biggest concerns I had in putting him in a daycare is I’ve always put him on his tummy to sleep because he was such a spitty baby," said Burgraff. "He seemed to sleep a lot better. By law, they can’t do that here.”

In September of 2001, Wisconsin state law began requiring child care providers to place infants to sleep on their backs. Fennessey said they take a number of measures to reduce the risk of SIDS.

“Kids are definitely laid on there backs under a year. There are no bumper pads or anything. There are no stuffed animals put in there," she said. "If they have a blanket, it’s tightly wrapped around them. All of the sheets are fitted sheets so they can’t come up. The rooms are kept no hotter than probably 68-69 degrees.” All these actions are taken to comply with state law according to Fennessey.

“The rules are there for a reason,” she said.

When providers fail to follow state regulations, tragedy may be the end result.

Barnyard Buddies Child Care Center in Poplar may have to close its doors after a three- month-old infant died there in August, apparently from SIDS. Douglas County Medical Examiner Darrell Witt listed the baby’s sleeping position as a possible contributing factor to her death.

“The comments were made that the room where the baby was sleeping was very warm and that the staff had stated that the baby had been placed on its stomach," Witt said. "The pathologist stated that these both could be contributing factors, but would not go as far to say that, yes, they were in fact contributing factors.”

A state investigation of the center found several violations of SIDS risk reduction law. The state has decided to revoke the center’s license. Barnyard Buddies owner Scott Pearson is appealing. Northern Bureau Licensing Chief Julie Strong is with the Wisconsin Department of Children and Families. They cited Barnyard Buddies for failing to place the child to sleep on her back.

“Over the last year, we have issued 212 violations to 200 different centers for violating that rule and that’s in both family and group," Strong said. "We license close to 6,000 child care centers in the state. We feel that overall we have good compliance in this area.”

For Burgraff, she can breathe a little easier knowing her son is in good hands.

“You really have to as a parent say to yourself, ‘I can’t live my life in fear.’”

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Life after loss

The third and final installment in a series on Sudden Infant Death Syndrome looks at parents and loved ones coping with an infant’s death.

By Danielle Kaeding

The death of a loved one is difficult for anyone. The loss of a child is devastating for parents. Parents Debbie and John Jacobson of Duluth and Scott Pearson of Poplar have one thing in common. Their lives have been forever changed by Sudden Infant Death Syndrome. This story begins at the end of two lives. Those who are left behind must move on without the ones they love.

The Jacobson’s lost their two-month-old son Brian in February of 1987. Almost 22 years later, the grief over his passing is still there.

"I still have his picture on my desk,” said Debbie Jacobson. “His picture hangs at home. You look at the changes in the pictures between our two daughters. His never changes. To be able to look back and talk about his birth,” She said, blinking back tears. “But then we laugh about it. And it's one of the ways of coping.”

Duluth St. Mary’s Medical Center Grief Counselor Ben Wolfe tries to help parents do just that.

"Our goal is to help people not forget, but in fact embrace,” Wolfe said. Not to just cope with the loss, but in fact to be transformed by that loss."

The Jacobson’s went to a support group to help work through the grief.

“We were getting a little better after a year, year and a half,” said John Jacobson. “We came walking down the hallway, and we were joking. We walked into the room, and there were like two new people in there. Here we were laughing and giggling. But, we stayed afterwards and we actually apologized to the co-facilitator, saying you know, 'We didn't mean to come in joking.' And she said, 'No, that's perfect. These people see that there is hope. You do get through it."

The grief from the loss of an infant affects more than the parents according to Scott Pearson. His niece’s three-month-old daughter Kassidy passed away at the daycare center he owns in Poplar. He believes her death has transformed everyone there.

“We have a very close-knit clientele here. Everybody knows me very well. I know them very well,” Pearson said. “They knew it was just something that happened and was very unfortunate.”

Although grief counselors are well-trained to help people cope with the loss of a loved one, Wolfe said they don’t take the place of those closest to grieving parents.

"We're there for periods of time, but, in the long run, it's the people that are closest--it's the one that they are comfortable with and hang out with and do things with--those are the people that do a great job,” he said.

Northern Wisconsin Infant Death Center Spokesperson Dora Gorski knows how difficult it can be for parents. She lost a child to SIDS. Gorski thinks the best way to help parents cope is to listen.

“There’s never a perfect thing to say, and, when you talk to people who are grieving, it’s always possible to say the wrong thing,” she said. “But, it’s never the wrong thing to listen—to be there and say, ‘I care. Tell me about your baby.’ Because when you’ve lost an infant, you don’t want that infant to be forgotten.”

Pearson added it’s important parents realize they’re not responsible for their child’s death.

“I’ve known other families who’ve gone through this,” he said. “Just so they realize that more than likely they did nothing wrong. It’s just something that happens for no apparent reason and not to feel guilty about it.”

The Jacobsons want others to know grief is a lifelong experience.

“You can't just shut it out and think it's going to go away--because it won't. There's no timetable. Everybody's different. Everybody grieves differently. And you just kind of work your way through it."

All of them hope that parents in similar situations know they’re not alone. Help is out there.

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