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Transcript: NICHD Research Perspectives—November 4, 2013

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Announcer: From the Eunice Kennedy Shriver National Institute of Child Health and Human Development, part of the National Institutes of Health, welcome to another installment of NICHD Research Perspectives.

Dr. Alan Guttmacher: Hello, I’m Alan Guttmacher, Director of the NICHD. Thanks for joining us today.

If you have ever cared for an infant, you know that babies spend most of the day sleeping. What you might not know is that a baby’s safety depends on where, and how, he or she is placed to sleep. In fact, the leading cause of infant death, from age 1 month to 1 year, is sleep-related.

I’m talking of course about SIDS—Sudden Infant Death Syndrome. Health education efforts over the last couple of decades have led to a 50 percent decrease in SIDS in the United States as more parents and other caregivers have learned about the importance of placing babies on their backs to sleep. But unfortunately, there are still babies dying from SIDS and other sleep-related causes of death, including accidental suffocation in bed.

These tragedies occur in all communities, but certain minority groups in the U.S. are disproportionately affected—with the highest rates in American Indian/Alaska Native communities and African American communities.

Safe sleep practices can reduce sleep-related causes of infant death for all populations. But there’s still more to do to eliminate the problem. NICHD is playing a leading role in that effort by supporting research to determine the causes of SIDS and to identify effective interventions. We also support tailored outreach efforts in communities with some of the highest rates of infant death, so parents, caregivers, and health care providers know what they can do to better protect babies.

Here with us today are two NICHD staff members who lead our efforts in this area:

  • Marian Willinger, from our Pregnancy and Perinatology Branch, oversees our extramural research on SIDS; and
  • Shavon Artis, from our communications office, directs our Safe to Sleep health education campaign.

Also joining us are three prominent clinician researchers from outside NIH who can tell us about some current studies and about efforts to get scientific findings into the hands of health care providers and families. They are:

  • Rachel Moon, who is a pediatrician at Children’s National Medical Center in Washington, DC, and serves as chair of the American Academy of Pediatrics, or AAP, Task Force on SIDS.
  • Eve Colson is a professor of pediatrics at Yale University School of Medicine in New Haven, CT.
  • And Fern Hauck is a professor of family medicine at the University of Virginia and also a member of the AAP Task Force on SIDS.

I’d like to turn first to Marian Willinger, who oversees NICHD’s portfolio of SIDS research. Marian, let’s start with the basics. What do we mean by the term “sleep-related causes of infant death”? What does that actually include?

Dr. Marian Willinger: When we are talking about sleep-related causes of infant death, we are referring to those deaths that are unexpected and that happen during a sleep time, either nap or nighttime. These deaths are uncommon—less than 1 in 1,000 births—but when they occur, they are devastating to a family. In 2010, about 3,700 babies died from an unexpected sleep-related death. Examples of explained causes of sleep-related infant death include accidental suffocation from pillows or blankets, overlay during bed sharing, entrapment between the mattress and the bed frame, and strangulation between slats in a poorly constructed crib. These causes require evidence that the baby’s airway was blocked in such a way that it could not breathe or that it was fatally injured. These causes of death are always in an unsafe sleep environment, such as adult beds, waterbeds, cribs that do not meet safety standards, or during bed sharing. Sudden Infant Death Syndrome, or SIDS, is another sleep-related cause of infant death. It is the death of an infant, which remains unexplained after a complete investigation. That includes a review of the medical history, an autopsy, and an investigation of the place where the baby was found dead. There is no evidence of suffocation or strangulation or entrapment. That is, there’s no evidence that the baby’s airway was blocked in such a way that it could not breathe or it was fatally injured. Babies who die of SIDS are found dead after a night- or naptime sleep. SIDS deaths are more likely to occur in an unsafe sleep environment, such as if the baby is placed on their stomach or side to sleep; if there is soft bedding, such as quilts or comforters or pillows in the sleep area; if the baby is put to sleep on an adult bed, couch, or sofa; or if the baby shares a bed with another child or adult. SIDS deaths can also occur in safe sleep environments, although the chances are much less likely.

Dr. Guttmacher: Marian, what else do we know about SIDS?

Dr. Willinger: Most babies who die of SIDS are between 1 month and 4 months of age, with 90 percent occurring by 6 months of age. They die unexpectedly: there is nothing in their medical history or after an autopsy that can explain their death. So, very special methods are used to study the tissues of babies who die of SIDS and babies dying of other causes. Mounting evidence suggests that many babies who succumb to SIDS are born with brain abnormalities that are located in a portion of the brain stem that controls breathing, heart rate, blood pressure, temperature, and waking from sleep. These abnormalities are found in a very specific network of nerve cells that use serotonin as a neurotransmitter. Most babies can encounter and survive environmental stressors during sleep that increase the risk for Sudden Infant Death Syndrome, and these include stomach sleep position, overheating, secondhand tobacco smoke, or an upper respiratory infection. However, SIDS babies, it is believed, have these abnormalities that interfere with the brain’s protective responses to these threats that the stressors pose to the baby’s arousal, breathing, and heart function during sleep. Right now, we do not have a test that can tell us which baby has these brain abnormalities. Therefore, the best way to reduce the risk for SIDS is to remove the environmental stressors. In fact, as more babies are placed to sleep on their back, the SIDS rate has been cut in half. Researchers are making progress, and it is hoped that one day we will have a test to identify a vulnerable newborn and provide a therapy that will prevent them from dying in the first few months of life.

Dr. Guttmacher: Thanks, Marian. Next up is Rachel Moon, a pediatrician at Children’s National Medical Center and chair of the AAP’s Task Force on SIDS, as I mentioned before. Rachel, we may not yet know all the causes of SIDS, but we have learned about some of the factors that increase the risk for SIDS and other sleep-related infant deaths. Some of them Marian just mentioned for us. What should parents and caregivers do to reduce these sorts of risks?

Dr. Rachel Moon: There are many ways that you can reduce the risk for each baby, and the great thing about this is that these measures help to reduce the risk of SIDS and of the accidental deaths that Dr. Willinger was talking about. So first of all, you want to make sure that the baby is sleeping on the back, not only at night, but also during nap times. The baby should never be on the side and should never be on the stomach when they’re asleep. The baby should be in a crib, and the only thing that should be in the crib is a firm, snugly fitting mattress with a fitted sheet and the baby. There should be no blankets or pillows or bumper pads or stuffed animals in the crib. If you’re worried that your baby will be cold, you can put him or her in sleep clothing to keep them warm. You don’t want to sleep with your baby on a bed or on a couch or a sofa. We recommend that the crib be placed next to your bed, so that it’s easier to monitor and feed the baby. Breastfeed your baby because we know that this protects against SIDS. Pacifier use at nap time and nighttime also helps protect against SIDS. And finally, don’t smoke during pregnancy or around your baby.

Dr. Guttmacher: Thanks, Rachel. Those are important points. What role do pediatricians have in sharing this information? And what is the American Academy of Pediatrics doing to educate pediatricians and other health care providers about them?

Dr. Moon: Pediatricians are critical—both as providers of information and as role models—and not just pediatricians, but all health care providers because many parents look to health care providers for advice about how best to care for their baby and they watch what they do. And if those health care providers aren’t role modeling these behaviors, then the parents think that it’s not important. The American Academy of Pediatrics publishes the Safe Sleep Guidelines in their journal Pediatrics, which is sent to every pediatrician who is a member of the AAP, and the AAP also disseminates these guidelines through newsletters, email blasts; and, in addition, there are many resources for pediatricians that AAP provides, such as books and pamphlets, posters, online courses, and webinars, so there are many ways that health care providers, not just pediatricians, can get the information.

Dr. Guttmacher: Thanks, Rachel. Eve Colson and Fern Hauck, you are both also doing important research in this area, from your posts at Yale and the University of Virginia, respectively. We’d be interested to hear your perspectives. Eve, why don’t we start with you? I know that you have been involved in the SAFE study, to better understand the barriers that may keep parents and caregivers from adopting the AAP recommendations. Can you tell us something about that study and what you’re trying to learn from it?

Dr. Eve Colson: Yes, thank you. This study is underway, and it’s been very exciting work for us. We have gone directly to hospitals to recruit mothers who just had a baby to be part of the study. There are 32 hospitals around the country participating, and the participants represent the population demographics of the United States. We have completed the first year and are beginning to look at the findings. What we can say so far is that more than 3,500 mothers have signed up for the study, and about 85 percent of those mothers have completed the study. We will learn a lot from them about where and how they place their infants to sleep. We also hope to learn about why they make the choices that they do.

Dr. Guttmacher: I know that you also recently published an article about infant bed sharing, which has very significant implications for safe sleep. What did you find?

Dr. Colson: Yeah, in that study, we found that bed sharing doubled from 1993 to 2010. Bed sharing was particularly common among Black and Hispanic infants. And Black infants are those who are at increased risk of SIDS and were the most likely to bed-share. Interestingly, more than half of the participants said that they did not get advice from their infant’s doctor about bed sharing. And Rachel mentioned why that’s so important. But for those who did get advice, it made a difference. If their doctor told them not to bed-share with their infant, they were much less likely to bed-share. We need to have more doctors and other health care providers advising families that they should not bed-share.

Dr. Guttmacher: Thanks, Eve. Fern, I know that you and Eve are co-principal investigators on the SMART Study, another study, and this one is testing new strategies to increase safe sleep practices. What strategies are you testing in that study, and how did you select those?

Dr. Fern Hauck: The SMART is a very exciting study. We are testing two main strategies. The first involves educating newborn nursery nurses about the latest safe sleep advice, so they are fully prepared and excited about teaching new mothers and their families about the recommended practices. We know from research that nurses are not always aware of all the recommendations; or even when they are, the nurses may not always be prepared to respond to mothers’ concerns and questions. We have been conducting focus groups and interviews with nursery nurses to best prepare the curriculum using methods that they suggest, making sure that we meet their needs so they can best meet the patients’ needs. The second strategy, and the most innovative, will use short videos about the safe sleep recommendations that will be then texted or emailed to new mothers. These will be sent starting the day of enrollment in the study right in the hospital and every 1 to 2 days for the first 2 months after the birth of their baby. We’ll not just focus on the recommendation, but we’ll also focus on the reasons that mothers tell us why they don’t follow the advice. For example, some mothers worry about their baby spitting up when placed to sleep on their back. We have a video that will explain that spitting up is less likely to happen on the back and the reasons why. With all young mothers pretty much having cell phones these days, we will capitalize on the use of this familiar technology.

Dr. Guttmacher: That’s very interesting—the use of new technology for what solves obviously a very old problem. Fern, I know that a lot of your own work is focused on how cultural factors may affect infants’ risk. Can you tell us more about that connection and why it’s important?

Dr. Hauck: Sure. We’ve already heard from you, earlier in the podcast, and others about the higher risk of SIDS and other sleep-related deaths among particularly African American and American Indian and Alaskan Native babies. The reason for the disparity is that there is a higher proportion of unsafe sleep practices in these groups. Notably, a higher percentage of African Americans still place their infants in the stomach or side sleep position despite the intensive educational efforts at NIH and many other organizations have put forth to try to address this problem. In addition, both African Americans and American Indians more often bed-share with their babies, another practice we know that puts them at higher risk of SIDS and suffocation deaths. It’s been difficult to change attitudes about bed sharing for a number of reasons, including mothers believing that it’s safer and better for their babies to sleep with them. So part of our job as educators is to work within these communities to better understand their reasons for the choices they make and provide reasons that make sense to the mothers to change their practices, while they still feel good about them. The team of our SMART study is helping parents make the best choices for their infant care practices, based on today’s research and evidence.

Dr. Guttmacher: Thanks, Dr. Hauck. Research plays a critical role in solving public health problems, but so does community outreach to put what we learn from that research into actual practice. Shavon Artis, from NICHD’s communications office, directs a public education campaign on safe infant sleep. Can you tell us something about what you’re doing through the Safe to Sleep campaign to educate communities?

Dr. Shavon Artis: Certainly. We’re actually doing a lot of outreach activities to various audiences, and we’re working with various groups, and we’re working through our campaign collaborators who have joined with us in the Safe to Sleep campaign to get our safe sleep messages out. We are really trying to make sure that parents, family members, and other caregivers are aware of the safe infant sleep messages, particularly the messages that Rachel mentioned earlier, and we’re making sure that we do that through our materials that are available online as well as in print from our Information Resource Center. We distribute those to community groups and faith-based groups. We work with our campaign collaborators and their constituents and those in their network to get the messages out. And not only do we get the messages out to parents and family members, we’re also working to get the message out to health care providers. We heard earlier how important it is to make sure that the health care providers are informing the mothers and those that are caring for infants about safe infant sleep, so we are working with nurses as well as pharmacists by providing them with a continuing education program that they are able to take online; and for the nurses we actually have a continuing education program available in print. And this allows these health care providers to learn about safe infant sleep, learn about the risk for SIDS, and share these safe infant sleep messages with their parents because, as we heard earlier, that they are the role models for parents and caregivers, and they actually model the behavior that they see practiced in the health care setting. We’re also working with community outreach workers across communities by providing them with training sessions so that they are able to deliver the appropriate safe infant sleep messages to the clients that they are working with in their community. And lastly, but certainly not least, we have a very focused state-based outreach effort in the state of Arkansas because Arkansas unfortunately does have one of the highest SIDS rates as well as other sleep-related infant deaths, and so we’re working with community groups and the state health department and other partners across the state to actually disseminate health messages to the communities so that we can get hopefully more people practicing safe infant sleep in areas where there are higher risks for SIDS and other sleep-related infant deaths. And as we heard earlier, there are certain communities that are at higher risk, particularly African Americans and American Indian and Alaskan Native communities, and we’re really spending a lot of our efforts and resources to make sure that we have tailored outreach to these communities so that our messages are not only culturally appropriate, but they can be disseminated by those within those communities to talk about safe infant sleep so that all members of their community are aware of things that they can do to promote safe infant sleep and hopefully reduce the risk of SIDS and other sleep-related infant deaths.

Dr. Guttmacher: Shavon, I know that through the Safe to Sleep campaign you’ve also had opportunities to dispel some common myths about safe sleep practices. What are some of those myths that you’ve encountered?

Dr. Artis: Yes, we’ve heard a couple. One that we hear quite often when we are out doing outreach in our training sessions is that back sleeping may cause the baby to choke. And healthy babies naturally swallow or cough up fluids and may actually clear fluids better when they’re on their backs. And once we are able to give that message, oftentimes those who are not willing to practice back sleeping with their infants are more likely to do it once they realize that back sleeping does not increase the risk for choking. Another myth that we hear sometimes is that if your baby rolls over during sleep that the baby should be placed on its back again. Really, rolling over is an important and natural part of the baby’s growth, and most babies start rolling over on their own around 4 to 6 months. If the baby rolls over on his or her own during sleep, you do not need to turn the baby over onto his or her back and it’s really important that parents and other caregivers place the baby on his or her back at the beginning of sleep time. And so we really want to make sure that we dispel those myths so that parents and caregivers and others who are caring for infants feel comfortable practicing these safe infant sleep behaviors.

Dr. Guttmacher: What can listeners do to help spread the Safe to Sleep campaign messages?

Dr. Artis: What’s most important is that everyone tells anyone who’s caring for a baby about ways to make the sleep environment safer for their infant. That means telling their grandmothers, telling their friends, telling the babysitters; anyone who is caring for an infant needs to know this message. We really want to make sure that the key messages about safe infant sleep are spread through the community. We want to make sure that everyone knows that your baby should be placed on its back to sleep for every sleep time; making sure that we’re promoting that the baby should be placed on a firm sleep surface with nothing around the baby—no blankets, no pillows, no soft objects or toys; and making sure that we’re promoting room sharing without bed sharing. We know that that’s also a very controversial sleep behavior message that is difficult to get out in the communities, and you heard earlier that unfortunately the higher-risk communities are more likely to practice bed sharing. But we want to talk about room sharing, where we actually bring the baby into the same room where parents sleep, and so that they’re in a separate sleep area, with nothing around the baby, on a fitted sheet in such as a safety-approved crib, bassinet, or play yard. These are messages that we are really working hard to get out through the Safe to Sleep campaign and working with our partners all around the country so that everyone knows about ways to make the sleep environment safer for their infants. Because—why is this important?—because babies are always being born, so we need to do everything we can to make sure that these safe infant sleep messages are repeated across all communities.

Dr. Guttmacher: Thanks, Shavon. That’s an excellent point to end with. Every year, about 4 million babies are born in the U.S., and I know myself, as a new grandparent this year for the first time, that there are new parents and caregivers constantly who need this information and that all of us can have a role in helping spread this word about safe infant sleep.

I also know that no family is immune from this: my wife’s youngest brother died from SIDS many years ago now. But I know in our family and many other families, this is something we think about a lot and try to talk with future generations about. But I also know from that experience that every family needs to be aware of this and every community does, so thank you for your work and all of the others who were a part of this podcast today for your work in both helping us better understand SIDS and sleep-related problems for infants and also in getting the word out so that what we do know we can better use to prevent SIDS and other causes of infant death.

For those of us who are listening today, if you’d like to learn more or get free educational materials to share, check out our website, safetosleep.nichd.nih.gov. That’s safetosleep.nichd.nih.gov. Thanks to all of our guests for being here today, and thanks to all of our listeners for joining us. I’m Alan Guttmacher, and I hope you’ll join us next month, for more NICHD Research Perspectives.

Announcer: This has been NICHD Research Perspectives. To listen to previous installments, visit http://nichd.nih.gov/researchperspectives. If you have any questions or comments, please email NICHDInformationResourceCenter@mail.nih.gov.

 

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Last Updated Date: 11/26/2013
Last Reviewed Date: 11/26/2013
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