AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
JENNIFER SEDIMEYER: I know that none of you work in the NICU. But do any of you work with SIDS education or FIMR program, anything like that? I'll try to relate this a little bit more to that aspect.
My name is Jennifer Sedimeyer, director of the Northern Virginia Perinatal Council. FIMR is one of the programs we run, and we do a lot of maternal education for healthy infants. I put this together when I was a discharge coordinator in a NICU, actually level four NICU. So I did the same job where I was trying to coordinate all these resources, trying to keep all these balls in the air. What we found is in trying to make arrangements for an apnea monitor and oxygen and all of these really complex things, sometimes we forgot about the basics, such as SIDS education.
So I'm just going to talk a little bit about what the catalyst for this project was. Physicians were discharging patients from the (inaudible) Fairfax Hospital for Children NICU. They were identifying that the parents were asking kind of inappropriate questions. When the baby is born in the NICU, when they're very small, we used developmentally supportive care. We placed the babies on their tummies. We used lots of soft items around them to keep them nested and in appropriate positions.
These parents, when they were taking home their term babies, were asking: Where can I buy these gel pillows to put in my baby's face and where can I buy these nests to use at home?
They were also asking things like: How can I prop the crib up at home to keep my baby's head up, things that were a little disturbing to some of the physicians.
At the same time we did have a baby that went home from the NICU and the mom placed him on his tummy to sleep and he did die of SIDS. When we asked the mom, you know, didn't you read the written instructions to put the baby on his back, she did say: Well, yeah, but I did what I saw you guys doing for the two months I was in the NICU and I put the baby on his tummy.
We decided that we needed to take action, and so this is just going to talk a little bit about the model that we developed, which has been picked up nationwide and used. And you may be able to use some of this teaching with the population that you see.
We did a literature review of the current guidelines for infant sleep, and we focused particularly on premature infants that were nearing term, correct gestational age. There wasn't a lot of information out there about preemies and SIDS. We did talk to experts in the field, and we talked to experts at the American Academy of Pediatrics, and we talked to them about how their recommendations pertained to infants that were born prematurely. We took all the recommendations and the literature that was out there and we compiled them into a report; and then we asked the staff members to volunteer for a task force to try to make sense of all this and how it would work in our NICU. The task force ended up developing guidelines for premature babies, which you all should have a copy of. They were placed out front. And then we also developed a parent handout to explain the transition process to parents.
The results for that practice is the NICU significantly improved in safety. Survey of NICU staff found the user guidelines or found the guidelines to be helpful and user friendly; and then a survey of NICU parents showed that the parents really appreciated the guidelines and they had increased knowledge and satisfaction with care.
I'm going to talk a little bit about the literature. I think I'm going to breeze through some of this because if you're not talking to parents on a daily basis about SIDS, it doesn't apply so much.
From a historical perspective, SIDS was mentioned in ancient Greek and Latin and Egyptian literature. It wasn't formally defined as Sudden Infant Death Syndrome until the late 1800s. Then at that time it was sudden and unexplained death in children. But it was written in the Bible. It's written in lots of ancient literature, a description that makes us think today that they were referring to SIDS.
The current definition of SIDS is the sudden death of an infant under one year of age which remains unexplained after a thorough case investigation, a complete autopsy, a death scene investigation and a review of the clinical history.
Basically, SIDS is a diagnosis of exclusion. So once they've done an autopsy and they've examined the death scene, if they can't find another cause for that, then a SIDS diagnosis is made.
SIDS is the third leading cause of death in infants under 12 months of age. The first two are prematurity and congenital anomalies. 91 percent of SIDS deaths occur before six months of age. The peak is between two to four months of age, and African American infants are two and a half times more likely to die than white infants.
SIDS is not caused by vomiting and choking, not caused by immunizations. It's not contagious or a result of neglect or child abuse. It's not hereditary. And it's not predictable. We don't know which children are going to die of SIDS. And it's not completely preventable, but we do know that there are some things we can do to reduce the risk of SIDS. That's what we really need parents to know about.
Some of these things that have been questioned, immunization factor. Most kids get their shots at two and four months, so that's the highest risk period. So there's been a correlation made between that, but most of the research shows that there really isn't any science to back that up.
Heredity; sometimes when children die they might have an underlying metabolic disorder that's classified as SIDS incorrectly.
Infants of mothers with late or no prenatal care, infants exposed to nicotine, infants with prenatal illicit drug exposure and infants of young mothers, under 20, are at higher risk. Male infants, multiples, African Americans, Native Americans, infants who sleep in the prone position and infants who sleep on soft bedding are at higher risk and then overheated infants.
We did find out in the literature that premature infants and low birth weight infants were 17 times more likely to die of SIDS than term infants. So in looking back on things, here we were doing all this complex medical planning. We were working to find these babies medical homes. We were doing lots of, you know, setting up of resources and things but we weren't doing the basic teaching about how the baby should sleep at night. Some of the theories about SIDS, and you're probably all familiar with this, the biggest theory right now is that there's an area of the brain that is hypoplastic or absent in SIDS babies and this has been seen on autopsy.
The area of the brain is the medullary arcuate nucleus. And this is either hypoplastic or not there. And the abnormality may put the infant at risk of death during sleep. This is the area of the brain that regulates autonomic and respiratory control during sleep. Another theory is the Atlas (inaudible) theory. This suggests a misalignment in utero or during the birth process causes damage that affects the cardiovascular and the respiratory systems and leads them to malfunction during the vulnerable postnatal period when infants are sleeping.
The most accepted model is the triple risk model. And this looks at the critical stage of development. When infants are going through a lot of growth and development in the first six months of life, the vulnerable infant, an infant who might have a response deficit or subtle brain stem dysfunction, and it looks at exogenous stressors. The theory is that if you have a child who is in its critical stages of development and it's also vulnerable infant, that when those two things come together, or when you add a third exogenous stressor, that's when an infant is at highest risk for SIDS.
If you have an infant in critical stage of development, who is also a vulnerable infant, maybe they .wouldn't die of SIDS if you prevented those stressors from coming into play.
We learned that the importance of NICU staff in stopping SIDS. We started looking at modeling research. And we found that a national study found that recommendations from the neonatal nursery staff increased the likelihood of the parents to follow through with supine sleeping and other guidelines. That's common sense.
The behaviors that should be taught to parents to reduce the risk of SIDS are to always place the baby on his or her back to sleep, even for naps, to place the baby on a firm mattress in a safety approved crib or bassinet. To remove soft fluffy bedding and stuffed toys from the baby's sleeping area, and make sure the baby's head and face remain unencumbered during sleep. Not to allow smoking around the baby, not to let the baby get too warm during sleep. And talk to child care providers, grandparents, all care givers about SIDS.
I can talk about these a little bit more in depth but I think I'm going to kind of breeze through some of this. Since 1992, you all know that the back to sleep campaign has been in existence. Infants who sleep on their backs are three times less likely to die from SIDS than those who sleep on their stomachs. Side sleeping is something that you still hear people recommending or you still see families doing. While that's better than prone sleeping, it still has twice the risk of SIDS. A lot of babies on their sides are likely to roll onto their tummies. Stomach sleeping. Babies sleeping on their stomachs, they do have lower blood pressure, higher heart rate, higher body temperature, so they do sleep better. The problem is their arousal may be diminished. They may be sleeping so well they're not able to wake up. These babies are also more likely to get their face up against a mattress or something soft and rebreathe carbon dioxide or overheat.
So the Back to Sleep program was officially launched in 1994. That was when the first advisory was announced, and since that time the SIDS deaths have dropped by 50%. When all babies slept on their stomachs there are approximately 5,000 to 6,000 deaths per year now there's just about over 2,000 deaths per year from SIDS.
We get the question a lot from parents what about aspiration? A lot of kids in the NICU have reflux. And this is something that there's a lot of controversy over actually. We did talk to the AAP. They said there's no evidence of an increase in aspiration or increased complaints of vomiting since the incidence of supine sleeping has increased dramatically. They also said there's some direct and indirect evidence that infants who vomit are at greater risk of choking if they're sleeping face down. This relates to the laryngeal chemo reflexes that infants have, and there's research to suggest that those are effective when the infant is lying on their back, but that they're ineffective when the infant is on its tummy.
We want to remind parents to place their baby on a firm mattress in a safety approved crib or bassinet. There's a lot of literature out there right now talking about bed sharing. To promote breast feeding and bonding with the baby. We do tell parents not to place the baby to sleep on a waterbed or sofa or cushion that's soft where there might be fluffy items in the bed. We recommend a safe crib. And a safe crib is in good repair, with a firm mattress in it. We go through all the safety information with them about the slats. We ask parents not to use hand‑me‑down cribs or cribs that don't have a current safety inspection.
Again, back to bed sharing. According to the SIDS alliance, it's not protective against SIDS. There's some literature out there saying that the baby's more likely to keep in time with breathing to the parent’s breathing, but the AAP discourages bed sharing. Bed sharing does become unsafe and confers a higher risk of SIDS when the parents smoke and bed share. When the parents are exhausted, which most new parents are, or if the parents are under the influence of alcohol or drugs. We do encourage rooming‑in rather than bed sharing. There are those new, they almost look like side cars that go on the side of a bed. We do encourage parents to use those if they insist having the baby in bed with them.
Removing soft, fluffy bedding and stuffed toys from the baby's sleep area is the recommendation. In the NICU, we try to personalize the small space that the family has, let them bring in family quilts and stuffed animals, items for the baby. And this sets a really bad example honestly. We only have limited space for that baby. The baby is on a monitor in the NICU. So we let them have all these personal items, but really none of those items should be in their sleep space when they go home.
We tell the parents to remove bumper pads from cribs, to remove wedges from cribs. Not to place the stuffed animals and things in their beds when they're sleeping, and then crib sheets are also a big cause of death for infants. We want to make sure parents know that the crib sheets fit well and are meant to go on the mattress for their crib.
Making sure the baby's head and face remain uncovered during sleep is important. We have a large Hispanic population where I work, and they love to put six, seven blankets around their babies and bundle them up and keep them warm. There's a lot of education, especially with that population. The fluffier the better is the mind set. We want to make sure babies don't get overheated or they don't have so many fluffy items around their face that they're going to suffocate.
This goes back again to not letting them get too warm during sleep. Taking off some of those layers when a baby goes inside, if they've been traveling outside and they're coming inside for any extended period of time.
Do not allow smoking around the baby. Nicotine is known to cause cell damage. It may shut off the fetal response to hypoxia. Mothers who smoke during pregnancy have three times the risk of a SIDS baby as nonsmoking mothers. And exposure to passive smokers, once the baby is born, increases the risk by 50%; and then if there's other people in the house that smoke, it increases the risk in a dose‑dependent manner.
This one was really surprising to all of us when we started to do the research. It was talk to child care providers, grandparents, baby‑sitters and care givers about SIDS risk. Basically, if grandparents are involved with the baby's care or a child care provider, they really need to know that the baby is supposed to sleep on their back. People have really good intentions, and even child care providers, if they were trained before 1992, were taught to put babies on their sides or on their tummies. About 20% of the babies that die of SIDS each year die by being cared for by someone other than their parents. This is really a shocking statistic. Half of these children die in their first week of daycare. Babies are unaccustomed to sleeping on their stomachs, they're at significantly increased risk when they get used to sleeping on their backs and suddenly there's a change in their environment and they're flipped to their tummies. They don't arouse as well.
So parents should tell caretakers they want the baby to sleep on his or her back even at nighttime.
Ideally, this is how an infant under one year of age should sleep: He's on a firm mattress in a crib that meets safety standards. There's no quilt, pillows or toys in the crib. And the baby is with his feet at the foot of the crib. The blanket being tucked around him almost like a sleeping bag, only reaching as far as his chest.
Modeling the proper behaviors in the NICU is another story. In the NICU people are very focused on developmentally supportive care. They're used to doing things a certain way. And in the NICU where I work we have a separate step‑down room, but it's not really a step‑down unit. So people would continue these habits more than anything, and I'll show you some pictures in a minute. Basically from doing research on modeling, we learned that stomach sleeping in the hospital equaled stomach sleeping at home. The same is true for all of this nesting and bundling and multiple blankets and stuffed animals and things in the bed and always putting the head of the bed up.
In the study that I mentioned earlier that showed premature infants were 17 times more likely to die of SIDS, much of the risk was attributed to poor behaviors that parents learned in the NICU. So what do parents see in the NICU? These are the pictures that we went around and took before we started this training. These were all infants that were, it was the week that they were going home from the NICU.
And also I will say, just to not give our NICU a bad name, I worked ‑‑ I'm the director of perinatal outreach. I've been to many other NICUs. I know it's not unique. So this is a baby that was going home in four days, and you can see here the head of the bed was up. The baby was nested with stuffed animals and a quilt in the bed and she was in the slide sleeping position. This baby was sleeping prone with multiple layers of soft bedding and things in the bed.
And this one, there was a covering over the baby's face and there were multiple objects in the sleeping area. Can you find a baby at all in?
UNIDENTIFIED SPEAKER: (Inaudible)
JENNIFER SEDIMEYER: We try to keep it at 70 degrees, but it's very drafty, you can see the baby has the covering over its face.
UNIDENTIFIED SPEAKER: That's why I asked.
JENNIFER SEDIMEYER: It's something you see a lot less of now in our NICU.
UNIDENTIFIED SPEAKER: What's the relative humidity
JENNIFER SEDIMEYER: I'm not sure what the relative humidity is to be honest. We try to keep it at 70, 75 degrees temperature wise. I'm not sure if they gauge the humidity.
UNIDENTIFIED SPEAKER: What kind of heating system do you have?
JENNIFER SEDIMEYER: I don't know. We have engineering, if we feel it's drafty or the temperature is unstalbe we'll call engineering.
UNIDENTIFIED SPEAKER: What kind of routine care (inaudible) baby's airways (inaudible)
JENNIFER SEDIMEYER: We follow the Relay protocol from the Vermont (inaudible). It depends what their needs are. Are you asking for like a nasal canula?
UNIDENTIFIED SPEAKER: What do you do with salt water nose drops? Do you recommend the parents (inaudible).
JENNIFER SEDIMEYER: We don't recommend them when we take the babies home. We do use them in the NICU. That's a good point. We don't recommend it at home for routine care. That's interesting because we've seen a lot, and I don't work in this NICU anymore, but we have seen a lot in the FIMR data that babies have nasal congestion. It's a big association with SIDS and we've been picking up on that.
UNIDENTIFIED SPEAKER: The relative humidity in most of the households, any place, it's zero in the winter, especially with the dry area...
JENNIFER SEDIMEYER: And is there a higher incidence of SIDS north of here?
UNIDENTIFIED SPEAKER: Good question. I was going to ask what the epidemiology was of that?
JENNIFER SEDIMEYER: Yeah, the Back to Sleep was, you know they attributed it to the dropping the rate in half.
UNIDENTIFIED SPEAKER: I'm saying was it (inaudible) across all regions of the country or was the drop greater in some parts than others?
JENNIFER SEDIMEYER: I don't know, to be honest. This was an overview that we did looking specifically at this practice. And so I would need to go back. And, again, I did this two years ago. So I would have to look at more specific information.
UNIDENTIFIED SPEAKER: Takes time to (inaudible)
JENNIFER SEDIMEYER: Yeah, absolutely. Absolutely. But we could see from these pictures that we were definitely giving the wrong message in what we were doing.
This baby had his face right up against the soft bedding and he was going home in just a few days.
This was another one where, just out of habit, we were always putting the babies' heads up. And at home, when they sleep flat, that can affect their sleep pattern. So you can see again the heavy nonsecured item over the face because the room is drafty or something like that. And the bed is elevated. This was a baby that never had issues with emesis or reflux, but just out of habit the head of the bed was put up. This baby was one of those babies, when we unwrapped her, she had six blankets on the crib and the temperature was high.
So we wanted to learn from our mistakes and take action. One of the things we learned right away was that the staff could be unwittingly poor role models for the parents when they were in the NICU. The prone positioning and the elaborate nesting, the use of soft bedding, gel pillows, it can be safe in the NICU when a baby is on the monitor but it can be potentially lethal when at home.
The staff members that participate in this task force, the task force met weekly to discuss what the current recommendations were for preventing SIDS and then how we could better incorporate them into our NICU.
The goal of the task force was that all infants would be following the AAP's recommendation for sleep before their day of discharge. We did develop these guidelines you all have a copy of. And we divided them into under 32 weeks correct to gestational age and less than 1500 grams; 32 weeks to 35 weeks corrected gestational age and greater than 1500 grams; and then greater than 35 weeks.
And then we further divided them by sleep position, blankets used for swaddling, family quilts and large blankets, gel pillows and sheep skins that we used, stuffed animals and what kind of parent teaching we did.
The guidelines were very, very useful, and we have had other NICUs across the country use them, and I've gotten a lot of good feedback saying they're helpful. These were our guidelines. They're very specific to the NICU I was working in at the time. So people have made changes to them depending on what hospital they're at.
So the task force agreed that the guidelines would be more effective than a policy. The reason they decided that is because of the reason that you just said. The room is not always going to be 70 degrees, especially in a large room where you might have, where you have 100‑bed NICU. So it's really hard to regulate the large rooms like that. So one of the things that we did agree was that if there was a variation from the recommendations, especially when we were transitioning, that if the baby was not following one of the guidelines, a physician would write an order for that. So extra blanket over the baby's face because they're in a drafty spot, and we did all come to that agreement.
We did agree that the sleep positions and conditions would be adjusted to follow the guidelines as soon as the baby was physiologically and developmentally ready. If the baby was expected to follow any other guidelines for sleep other than recommendations, like I said, they would have specific written instruction, the physician would also discuss that reason with the parents.
The task force also developed a parent handout which you should have a copy of as well. They explained the transition process. This is what you've seen and this is why we were doing it, but now this is what we're doing now and this is why this is important.
If the patient was getting ready to go home and the staff were unable to follow the guidelines for some reason, it was important to document why you weren't following the guideline; the room was too drafty so I used a blanket and that needed to be document in the chart. The biggest thing that we saw out of this was that there was no more waiting until the day of discharge to review these guidelines. There was a discussion going on about it. Parents were asking questions, and really, they were more aware of what the guidelines were.
We did learn that there was room for both developmentally supportive care and SIDS prevention recommendations in the NICU. There was a lot of resistance to this. You wouldn't believe how much resistance there was to it. But we do think it's made a big difference in the kind of knowledge that our parents and our families have when they go home.
We need to carefully consider each child's changing clinical status, gestational maturity and individual readiness for supine sleeping. And the ultimate goal is to help these high risk babies remain healthy babies after they go home.
So you don't work in a NICU, but all of you do make a difference with families and educating them. So if you do have a high risk infant who's coming from NICU or PICU or anywhere else and you're educating them, make sure they're aware of the most basic thing like Back to Sleep, and use your influence as healthcare providers because you make a difference. And I have some more information. Again, I do feel a little ill placed in this speaking, but I can talk a little bit if you have questions about providing a medical home. I did do that for two years with these really complex infants. I don't know if you have any questions about this in particular.