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NIH targets all causes of sleeping infant deaths

Only 4 months and 4 days old, Becky Borchardt dozed off on her tummy on a couch at her child care provider's home. She never woke up.

Since sudden infant death syndrome took Becky's life 21 years ago, her mother, Downers Grove resident Pam Borchardt, has dedicated her life to educating others about safe sleep practices for babies. And it's a message that she knew needed to reach beyond SIDS awareness alone.

"Quite a few years ago, I made the personal decision to speak less about the term 'SIDS' and more about the term 'safe sleep,'" said Borchardt, a master trainer of safe sleep techniques with her own consulting business.

Now the National Institutes of Health has made a similar shift. After 18 years of promoting a national campaign that focused mainly on SIDS education and awareness, NIH recently launched a safe sleep initiative — Safe to Sleep — that clearly highlights all sleep-related causes of infant death.

"All of our materials have been completely redone," said Shavon Artis, coordinator of the Safe to Sleep campaign and public health analyst for the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the NIH Institute that sponsors Safe to Sleep. "It's important that all parents and caregivers are aware of the safe sleep infant messages."

Safe to Sleep is an expansion of the Back to Sleep campaign, which started in 1994. Since it began, the overall national rate of SIDS — the sudden death of an infant younger than 1 that cannot be explained after a thorough investigation — has decreased by more than 50 percent, according to Centers for Disease Control and Prevention. In Illinois, the rate of SIDS deaths per 100,000 live births dropped from 133.4 in 1994 to 29.5 in 2007, according to Sudden Infant Death Services of Illinois Inc.

In the last decade, however, cases of sleep-related infant death other than SIDS have increased significantly, according to the Shriver institute. Sudden unexpected infant death cases are defined as all unexpected deaths of infants younger than age 1, including SIDS, suffocation, asphyxia, entrapment, infection, ingestion, metabolic diseases, cardiac arrhythmia and trauma.

Nationally, the number of infant suffocations in bed jumped from 425 in 2002 to 514 in 2005, according to SIDS of Illinois. Within the state, that number rose from 11 in 1996 to 33 in 2006.

"We know that many babies are dying," Artis said.

But many of the practices used to reduce the risk of SIDS can do the same for other sleep-related infant deaths, according to the American Academy of Pediatrics, which developed the safe-sleep recommendations behind the Safe to Sleep campaign.

Some of those suggestions include placing the baby to sleep on a firm mattress, keeping loose bedding and soft objects out of the crib and giving the infant a dry pacifier that is not attached to anything.

"There are clear data and evidence that many of these recommendations are valid," said Dr. Stephen Sheldon, professor of pediatrics at Northwestern University Feinberg School of Medicine and director of the Sleep Medicine Center at Ann & Robert H. Lurie Children's Hospital of Chicago.

In healthy children, probably the single most important guideline parents can follow is placing infants on their backs to sleep, he said. In every population that follows that practice, there has been between a 40 and 60 percent drop in SIDS events.

"There are no other studies that have been done in the last hundred years that have shown the remarkable changes in SIDS events as when babies are placed on their backs to sleep," Sheldon said.

Still, each risk factor counts, said Borchardt, former executive director of SIDS of Illinois, a nonprofit organization dedicated to reducing infant mortality and providing bereavement support. As factors are added to the infant's sleep environment, the risk multiplies.

For instance, babies who sleep on their stomachs have a five times greater risk of SIDS, according to the CJ Foundation for SIDS, one of the largest leading SIDS organizations in the country. Babies who sleep on soft bedding also have a five times greater risk of SIDS. But babies who sleep on their stomachs on top of soft bedding are at a 21 times greater risk.

"It's not five plus five," Borchardt said. "It's putting those two things together to create a much more dangerous environment for the baby."

No one knew about any of these risk factors when Borchardt's baby girl died two decades ago, she said. Letting Becky lie on her stomach on the couch was an act Borchardt herself often allowed.

As the years passed, Borchardt has commemorated every missed birthday and major benchmark, such as the start of kindergarten and graduation from high school.

"To learn to carry my child in my heart instead of in my arms took years," she said. "It's a process. It's a long, lengthy process. We never get over it. We never resolve it."

Thanks to the knowledge and information available today, fewer parents than ever should have to suffer such a tragedy, Borchardt said. And most of the actions needed to ensure a safe sleep environment for infants are free.

"It's very, very rare to have a baby die where everything we know to do has been done," she said.

With the Safe to Sleep campaign, NIH has added several new guidelines believed to reduce the risk of sleep-related infant death, Artis said. Now it is suggested that mothers breast-feed for the first six months, babies receive regular well-child checkups and immunizations and mothers avoid alcohol and illicit drug use during pregnancy and after giving birth. The American Academy of Pediatrics also suggests letting a baby share a room with his or her parents as long as the baby has its own safe-sleep space separate from the adult bed.

NIH hopes to launch a new, more comprehensive Safe to Sleep campaign website in November, Artis said. Already available on the current campaign website is a new Safe Sleep for Your Baby video. DVDs of the video will be available soon.

The real challenge is approaching parents in a way that's culturally appropriate and takes into account any barriers or traditions they might have, said Harold Pollack, University of Chicago Helen Ross professor in the School of Social Service Administration.

"We are not particularly good all the time at really dealing with people where they're at," said Pollack, a public health expert who has researched infant mortality prevention. "We need to be much better at effectively working with parents to make sure they're following these guidelines."

Pollack suggested giving more parents the opportunity to talk to a nurse or other health expert, who would then be able to learn parents' situations and help them deal with them one on one.

A program SIDS of Illinois has been doing since 2010 called Project Safe Sleep offers that one-on-one interaction, said executive director for education and community outreach Nancy Maruyama.

Through the project, SIDS of Illinois has provided more than 500 portable cribs or play yards to families that are 200 percent or more below the poverty level and don't have access to a safe sleep environment for their infants, she said. Each family also receives a fitted sheet to go on the play yard mattress and a onesie that says "Put me on my back to sleep."

A representative from SIDS of Illinois spends between 30 and 60 minutes at the recipients' home showing them how to set up and take down the portable play yard as well as providing safe sleep education, Maruyama said. Then, SIDS of Illinois does a follow-up with the family every three months until the baby turns 1.

"To my knowledge, we have not had any deaths (of recipients' babies) reported to us," she said.

Another way SIDS of Illinois has helped to open communication about infant safe sleep between new parents and health professionals was by pushing for a new state law now in affect for every birthing hospital in Illinois.

As of January 2011, the law requires that every hospital give parents of newborns written notice of safe sleep practices and have a nurse or appropriate employee go over the information with them verbally before the family is discharged. SIDS of Illinois provides the hospitals with the brochures and training needed, Maruyama said.

SIDS of Illinois was also a driving force behind a state law that requires all licensed child care providers to receive training on SIDS, SUID and safe sleep once every three years, she said. The law went into affect this January.

"Now as a parent, you can feel comfortable that this is information that your child care provider knows as well," Borchardt said.

Overall, infant deaths are on the decline, experts said. One explanation for the dramatic increase in sleep-related SUID cases other than SIDS in the past decade is that infant deaths are now being better classified.

Some of the cases that once would have been called SIDS today are more accurately diagnosed as various forms of SUID, Sheldon said. Improved death scene investigations and autopsies have led to better diagnoses.

SIDS used to be the catch-all diagnosis that covered any unexpected infant death that was not understood, Pollack said.

"There's been more of an effort in being careful labeling cause of death," Pollack said. Today, medical examiners are "much more careful about trying to distinguish SIDS from other things."

For instance, Maruyama said the death of her infant son might have been ruled accidental suffocation instead of SIDS if he had died recently instead of in 1985.

Brendan, only 4 months and 18 days old, was found by his baby sitter with his face against the bumper pad of a crib.

On the other hand, Naperville resident Rob Varak feels his infant daughter's death nearly eight years ago should have been ruled SIDS.

Molly was 4 months and 15 days old when she died at day care. The official cause of death was viral syndrome, but a recent cold had subsided and she was not coughing or showing signs of a problem.

Molly was rushed to the hospital but was never resuscitated, said Varak, 40.

He said it would have been easier to understand if there had been a car accident, fire or some other intervening cause. "For there to be nothing and her to be gone, it was not only impossible. It was absurd. You couldn't get from A to B at all."

Varak said he remembers having to pick out a casket and take care of some other issues. Other than those few interactions, however, he said he was completely numb, a "blank slate."

Joining a support group with SIDS of Illinois helped Varak and his wife start to put their lives together again, he said. In fact, the organization had such an impact on the Varaks that they started an annual fundraiser for the nonprofit group.

This month the Varaks hosted the eighth annual Molly Varak Oktoberfest. In those years, it has raised nearly $100,000 for SIDS of Illinois, he said.

"We immediately knew we wanted to do something to commemorate the memory of our daughter's life," Varak said. "You know that your child was only here for a limited time, but you want her name to be associated with something beyond that short time she was here."

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