July 16, Medscape Medical News: Bed-sharing infants experience more oxygen desaturations and episodes of carbon dioxide rebreathing than comparable cot-sleeping infants, according to results from a controlled study carried out in New Zealand. Although the study, published online July 16 in Pediatrics, also found that children who experienced those changes generally showed appropriate behavioral and physiologic responses, the authors caution that some vulnerable infants might not exhibit such responses, and therefore might be at increased risk for sudden infant death syndrome (SIDS). Link to Article
This article was originally posted on NPR, July 15, 2011. Written by Andrea Hsu.
Rethinking SIDS: Many Deaths No Longer A Mystery
The thought of a baby dying suddenly and unexpectedly is one that keeps parents awake at night, fearing the worst. For years, little was known about sudden infant death syndrome, or SIDS. Babies would die in their sleep, and it was presumed that little could be done to prevent those deaths.
Today in the U.S., more than 2,000 babies die of SIDS every year, according to government figures.
But the mystery surrounding SIDS is not what it once was. Many SIDS deaths are now believed to be accidents caused by unsafe sleep practices. And some are questioning whether the term SIDS remains relevant at all.
SIDS: A ‘Diagnosis Of Exclusion’
In Wayne County, Mich., 50 to 60 infants die suddenly and unexpectedly each year, most of them in Detroit.
For the past 11 years, the task of investigating those cases has fallen to Pat Tackitt, a pediatric mortality investigator for the Wayne County Medical Examiner’s Office.
When an infant dies, law enforcement will contact her. She’ll head out immediately to the family’s home, spending anywhere from one to five hours talking with the family, using a doll to help parents re-enact what happened.
She’ll hand the doll to the parents and ask them to show her where they placed the baby down, when they last saw the baby alive, and how they found him or her. She’ll also find out who and what was around.
In all, Tackitt has gone to the scene of more than 500 infant deaths — so many, she stopped counting.
In almost all of the cases, Tackitt says, she found that the baby was in an unsafe sleep environment. The baby may have been sleeping face down, may have been covered by a blanket or pillow, or may have gotten lodged between sofa cushions. In some cases, the baby was sleeping with a parent who rolled on top of the infant in the night.
Tackitt says these are all signs of accidental suffocation, not SIDS.
“There are some deaths that we cannot prevent. These are not those deaths,” she says. “The vast majority of these are preventable deaths. There’s been very, very few that we’ve seen that could not be prevented.”
SIDS is defined as the sudden death of an infant under 1 year of age, which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history.
It’s often called a “diagnosis of exclusion,” meaning it’s the diagnosis that’s given when everything else has been ruled out. But, Tackitt says, often the term SIDS comes up prematurely.
“We find that in many cases, families have been told from the time the ambulance drove up to the time that the clergy saw them in the emergency room … that this is going to be a SIDS death,” Tackitt says. “All that means is, ‘We don’t know.’ Why would we start out saying ‘we don’t know,’ when we haven’t even looked yet?”
Some would argue that a SIDS diagnosis offers compassion in a moment of distress, and a way to avoid blaming parents amid the tragedy.
Wayne County Chief Medical Examiner Carl Schmidt disagrees.
“I think that’s cruel,” Schmidt says. “I think actually sitting down with a parent and telling them what happened is much more humane than trying to obscure the reasons why that infant actually died. Most people really want to know what happened, so they won’t do it again.”
In Wayne County, it’s been four years since they last signed out a death as SIDS. And that’s true elsewhere, too.
The ‘Back To Sleep’ Campaign
At Children’s National Medical Center in Washington, D.C., pediatrician Rachel Moon says it’s been several years since they’ve seen what she calls a “true SIDS case” in the District.
“All the babies who died suddenly and unexpectedly have all died in unsafe sleep environments,” Moon says. “These are all cases that could have been prevented.”
Moon chairs the American Academy of Pediatrics Task Force on SIDS. In 1992, it was the academy that came out with the recommendation that babies be placed on their backs to sleep, not on their stomachs.
Baby Sleep Positions And SIDS Rates
In 1992, the American Academy of Pediatrics recommended that babies sleep on their backs to prevent accidental deaths. As the number of babies sleeping on their backs has increased, SIDS cases have decreased.
The “Back to Sleep” public health campaign that followed proved hugely successful. As back-sleeping rates soared, the SIDS rate dropped. By 2000, it had fallen 50 percent. But since then, progress has stalled.
About a quarter of parents in the U.S. say they don’t put their babies on their backs to sleep, and among African-Americans, it’s about half. According to statistics, African-American babies die of SIDS at a rate twice that of whites.
Moon has been researching why so many people disregard the recommendations. She’s found everything from misconceptions about the risks of choking to distrust of doctors to confusion and skepticism.
“What’s happening is, you tell people that SIDS is when a baby dies and you don’t know why. So then when you tell them they should put their baby on the back, sometimes they turn to you and say, ‘Well, wait a second, how can you tell me that putting my baby on the back is going to help prevent this thing that you don’t know what causes it?’ ”
Asked if she can imagine dropping the term “SIDS” at some point, she says, “Oh yeah, I can imagine a time when we just talk about safe sleep. And I think we’re starting to get there. I think if people know something’s preventable, and they can visualize it happening, then they’re more likely to take steps to try to prevent it.”
For now, though, Moon says, SIDS is a term people are familiar with. So she’ll continue to talk about “SIDS prevention.”
She does also believe that there are some true SIDS cases out there — cases in which babies were on their backs, alone in their cribs with nothing else in the crib. But, she says, those cases are very rare.
Can A Simpler Message Save Lives?
In Baltimore, public health officials have replaced the term “SIDS” with these ABCs: Alone. Back. Crib.
In literature distributed in hospitals and in public service announcements, there is almost no mention of SIDS, but rather the message “Sleep Safe.” They urge parents to share a room with their baby, but not a bed. They tell parents that the safest sleeping position for a baby is on his or her back, and that a baby is not more likely to choke while on the back. And they emphasize the importance of a clean and clear crib, free of blankets, pillows and toys.
From 2002 to 2010, unsafe sleep environments were identified in more than 90 percent of sleep-related infant deaths in Baltimore. The hope is that a simpler message will help save lives.
On a national level, the Centers for Disease Control and Prevention is piloting a Sudden Unexpected Infant Death case registry in several states. The goal is to create systems that allow people to more comprehensively describe the circumstances and events surrounding sudden infant deaths.
The pilot project followed a study that found great inconsistency in how SIDS deaths are reported.
CDC senior scientist Carrie Shapiro-Mendoza led that study, which looked at two years of SIDS-coded death certificates. She found that in a third of the deaths, SIDS was not explicitly reported by the certifier, raising questions about whether the certifier meant for the deaths to be counted as SIDS.
Instead of the term SIDS, the certifiers used other terms, including “sudden infant death” and “sudden unexpected death in infancy.” Some had accompanying notes pointing to unsafe sleep environments. Still, because of the way death certificates are coded, they became part of the national SIDS statistic.
Shapiro-Mendoza also found that SIDS can mean different things to different people. She points out that certifiers have varying levels of education.
“In some large metropolitan areas, for instance, you may have a medical examiner who is a board-certified pediatric pathologist,” she says. “In other smaller counties or jurisdictions, you may have an elected official, coroner, and he may have no medical background.”
The report concludes that nationally established guidelines for infant death scene investigations would help in the reporting and classification of infant deaths, and that in turn could help with identifying trends.
“If we understand the mechanisms that caused these deaths, if we can actually explain why they occurred, we can hopefully prevent these deaths,” Shapiro-Mendoza says.
by Bethany Mohr, M.D, University of Michigan, Child Protection Team
A couple in their thirties just moved into a new house with their 6 week-old daughter. The couple was waiting for the movers to deliver their belongings the next morning; including the baby’s crib. The baby’s father went out and bought an inflatable air bed. The couple filled the air bed using the included air pump until the bed was firm. The baby was laid down on the mattress on her back covered with a thin blanket. Mom went to check on the baby after doing some cleaning and found the baby enveloped in the deflated bed. EMS was called but was unable to resuscitate the baby.
In July of this year, over a 2-day period, 5 Michigan infants from Wayne County died while sleeping unsafely. These tragic deaths could have been prevented with safe sleeping practices; however, safe sleeping practices are often undermined by family traditions and poverty. Also, these deaths could have been potentially and mistakenly classified as SIDS.The infant mortality rate in Michigan has continued to fall along with the incidence of Sudden Infant Death Syndrome. However, SIDS is still responsible for more infant deaths in the United States than any other cause of death during infancy beyond the neonatal period. In order to classify a baby’s death as SIDS, the following criteria must be met:
- 1. Sudden death of an infant under 1 year of age
- 2. Death remains unexplained after a thorough case investigation, performance of a complete autopsy, examination of the death scene, and review of the clinical history.
In spite of these criteria, infant deaths may be misclassified as SIDS depending on how “thorough” the case investigation is and how closely the death scene is examined. Case investigations and death scene examinations may lead to a different determination of cause of death depending on who conducts these investigations and the standards utilized. All people potentially involved in such investigations should be knowledgeable about child death/injury interview and documentation guidelines (http://www.epicmedics.org/deathcardgood.doc ) and the use of a SUID Investigation Doll. Deaths mistakenly attributed to SIDS may lead to further infant deaths. For example, if no cause of death is identified, families may not receive the education and resources necessary to prevent further deaths due to unsafe sleeping practices or conditions.
In order to clearly assess and document the number of infant deaths due to preventable causes, these deaths must be recorded into separate categories. For instance, in the State of Michigan, the total number of infant deaths is broken down by cause. However, no categories exist to clearly represent the number of infant deaths due to unsafe sleeping practices. Much debate exists regarding how to categorize these deaths when investigation reveals the presence of risk factors such as unsafe sleep position, location, bedding, or bed sharing; is the death due to SIDS, accidental suffocation, or should the manner and cause be classified as undetermined? In some cases, these deaths may be homicides when alcohol, drugs, or gross negligence is involved. Deaths due to neglect may also be classified as “natural” and caused by SIDS but, in actuality, are the result of neglect or intentional suffocation. In any case, deaths associated with unsafe sleeping practices cannot be simply considered and coded as “accidents.”
With regard to the term “SIDS”-SIDS is not truly a cause of death but the end result of a process which was not elucidated. The term “Sudden Unexpected Infant Death” has been proposed but is still wrought with the same drawbacks as the term “SIDS” if used alone. A lack of experience or time leading to an incomplete investigation may often lead to a diagnosis of SIDS.
The ultimate goal is prevention of these deaths. As a pediatrician who has worked in a busy university pediatric practice and newborn nurseries, I am constantly educating families about safe sleep. I am aware of many parents’ reluctance to not bed share with their babies. Although the recommendation is often to avoid bed sharing after consuming alcohol or prescription drugs which may decrease arousal or when extremely fatigued, selectively applying a public health warning is problematic (as previously stated by the Michigan FIMR Network). Bed sharing is an extremely controversial topic, especially with breastfeeding mothers and their babies. Strong cases have been made that bed sharing facilitates breastfeeding and enhances the maternal-infant bond. In spite of this, due to the potential tragic consequences of this sleeping arrangement, room sharing (infant sleeping in the parents’ room) is the best alternative. However, if a baby is brought into the parents’ bed for a feeding, the baby needs to be returned to their own sleeping environment to avoid the risks associated with bed sharing.
Parents must also be aware of potential risks even if a baby is in his/her own sleeping environment. A safe sleeping environment is deserved by every baby and education regarding an infant’s sleep environment must be offered to every parent, irrespective of their perceived level of experience in child-rearing and/or socioeconomic status. Babies are unsafe sleeping on soft surfaces such as some waterbeds, air mattresses, pillows, and comforters. All loose bedding is a risk as well as bumper pads, thick blankets, toys, and stuffed animals. If the environment is cold, babies should be dressed in a sleep sack, footed sleeper, or thin layers of clothing; babies should not be covered with heavy or multiple blankets.
Safe sleeping conditions and practices must be maintained by secondary caregivers as well. Day care centers, in-home child care, relatives, and friends must all be familiar with safe sleep practices for infants and need to provide an appropriate sleep environment.
In addition, physicians and other medical providers need to “practice what we preach” and set examples for our patients and families. Day after day, bassinettes in hospital nurseries are cluttered with stuff animals and toys and the babies are tightly swaddled in, many times, more than one blanket. If we are teaching caregivers that an empty crib with a firm mattress covered with a tight fitting sheet and a thin blanket loosely laid over a baby is optimal, why are we reinforcing the opposite?
This month’s newsletter is dedicated to Safe Sleep Practices for Infants and the need for continued education, better investigations, and consistent and objective classifications of infant deaths by medical examiners in order to prevent these tragic and senseless deaths. The other articles in this issue provide further insight into this topic from the perspective of those dedicated to the safety of all infants.