What is Sudden Infant
Death Syndrome (SIDS)?
SIDS is the diagnosis
given for the sudden death of an infant under one year of age that
remains unexplained after a complete investigation, which includes an
autopsy, examination of the death scene (Center for Disease Control
and Prevention guidelines), and review of the symptoms or illnesses
the infant had prior to dying and any other pertinent medical and
family history. Because most babies sleep in cribs, and therefore,
most cases of SIDS occur when a baby is in a crib sleeping, SIDS is
sometimes called "crib death." Cribs do not cause SIDS, however, other
aspects of an infant's sleep environment have been associated with
increasing the risks for SIDS.
What causes SIDS?
There is mounting
evidence that suggests some SIDS babies
are born with brain
abnormalities that make them vulnerable
to sudden death during
infancy. Studies of SIDS victims
reveal that many SIDS
infants have abnormalities in the
"acurate nucleus," a
portion of the brain that is involved in
control of breathing and
waking during sleep. Babies born
with defects in other
portions of the brain or body may also
be more prone to a
sudden death. These abnormalities may
stem from prenatal
exposure to
a
toxic substance, or lack of
a vital compound in the
prenatal environment, such as
sufficient oxygen.
When is SIDS most
likely to occur?
SIDS is the leading cause of death in infants between one to 12
months old. Most SIDS deaths occur when a baby is between 2
and 4 months of age. The risk of SIDS then diminishes during the
first year of life. Currently, the diagnosis of SIDS is not used after
1 year of age.
Is there anything
we can do to prevent SIDS?
At this time, there is
no way of predicting which newborns will succumb to SIDS. However,
there are a few measures parents can take to lower the risk of their
child dying from SIDS in order to give their infant the best possible
chance to thrive.
Back Sleeping.
Placing babies on their backs to sleep is the single
most important step that parents and other caregivers can take to
reduce the risk of SIDS. Infants who fall asleep on their stomachs
should be gently turned onto their backs. Studies have shown that
countries where caregivers have switched from placing babies on their
stomachs to sleep to placing babies on their backs to sleep have
reduced their total SIDS deaths by as much as 50 percent. 2,000 fewer
infants die of SIDS in the U.S. each year due to this simple measure.
Bedding.
Parents should make sure their baby sleeps on a firm,
flat mattress in a crib that meets current safety standards.
Caregivers should also avoid using loose, fluffy blankets or coverings
and should not use pillows, sheepskins or comforters under the baby.
Consider using a sleeper or other sleep clothing as an alternative to
blankets, with no other covering. Infants under 1 year of age should
not be placed to sleep on a waterbed, sofa or with stuffed toys or
pillows.
Head Covering.
Make sure your baby's head remains uncovered during
sleep. Babies are at an increased risk for SIDS if their head becomes
covered during sleep. Avoid using a blanket or other covering over
your baby's face as a sun or weather screen, or to block out
distractions or sounds while your baby is sleeping. Bedding that
bunches up or contours around your baby's face can obstruct the mouth
and nose, causing potentially dangerous rebreathing of stale air.
Bedsharing/Sofa-sharing.
In addition to the recognized hazards presented by
pillows and comforters in the family bed, there are risks associated
with infants who sleep with parents whose instincts are impaired by
exhaustion, drug or alcohol abuse, or who are smokers. There are also
dangers connected with infants sharing a bed with brothers, sisters,
or relatives other than the baby's mother. Sofas and chairs are
particularly dangerous environments for shared sleep. Bedsharing has
not been found to be protective against SIDS, though studies suggest
that room-sharing may be protective. Keeping the baby next to the
adult bed in her own secure crib or bassinet provides greater safety
for the infant and proximity for parents seeking to facilitate
breastfeeding and share closeness with their baby.
Smoking.
Mothers who smoke during pregnancy are three times more
likely to have a SIDS baby, and exposure to passive smoke from smoking
by mothers, fathers, and others in the household after pregnancy
doubles a baby's risk of SIDS. Parents should be sure to keep their
babies in a smoke-free environment. Studies have found that the risk
of SIDS rises with each additional smoker in the household, the
numbers of cigarettes smoked a day, and the length of the infant's
exposure to cigarette smoke. Components of smoke are believed to
interfere with an infant's developing lungs and nervous system, and to
disrupt a baby's ability to wake from sleep.
Room Temperature.
Babies should be kept warm, but they should not be
allowed to get too warm. An overheated baby is more likely to go into
a deep sleep from which it is difficult to arouse. Keep the
temperature in the baby's room at a level that feels comfortable to an
adult and avoid overdressing the baby.
Prenatal Care.
Good prenatal care - including proper nutrition,
abstinence from alcohol, drugs, and smoking, and frequent medical
checkups beginning early in pregnancy might help prevent a baby from
developing an abnormality that could put him or her at risk for sudden
death.
Regular Health Care.
Parents should take their babies to their health care
provider for regular well baby checkups, and should make sure that
their babies receive their immunizations on schedule.
Child Care.
Babies who routinely sleep on their backs and are
unaccustomed to sleeping on their stomachs are at an 18 times higher
risk of SIDS when placed prone by a wellintentioned but ill-informed
relative or caregiver. Be sure to communicate Back to Sleep advisories
to baby sitters, daycare providers, grandparents and everyone else who
cares for your infant. Parents cannot assume that everyone knows about
Back to Sleep and other ways to reduce SIDS risk.
What is the Back
to Sleep campaign?
Back to Sleep is aptly
named for its main recommendation to place healthy infants on their
backs to sleep to reduce the risk of SIDS. The National Institute of
Child Health and Human Development (NICHD) leads the campaign, along
with the Maternal and Child Health Bureau and other Federal
agencies such as the Centers for Disease Control and the Census
Bureau. The American Academy of Pediatrics (AAP) is the major private
sponsor, along with the SIDS Alliance and the Association of SIDS and
Infant Mortality Programs. Based on a recommendation made by the AAP
in 1992, the campaign was launched in 1994 with an effort to reach
every newborn nursery in the country. A toll-free number was
established for ordering Back to Sleep pamphlets, posters, and videos.
In March 1997, Tipper Gore became national campaign spokesperson.
Is the campaign
successful?
This campaign has been
increasingly successful in reaching parents and other caregivers of
infants. We have seen a change from 70 percent of babies placed on
their stomachs to sleep in 1992 to 21 percent in 1998. The death rate
from SIDS declined by 42% o between 1992 and 1998, the first
significant decrease in SIDS deaths in the U.S.
Are there any
infants that are more at risk for SIDS?
Yes, infants in the
following categories are at a higher risk for SIDS:
-
Infants born to
mothers who are less than 20 years old at the time of their first
pregnancy.
-
Babies born to mothers
who had no or late prenatal care.
-
Infants born to
mothers with too short an interval between pregnancies.
-
Premature or low birth
weight babies and multiples.
-
Babies born to mothers
who smoke during or after pregnancy.
-
Infants who are placed
to sleep on their stomach.
Are any ethnic groups
more prone to SIDS?
African American infants
are more than two times more likely to die of SIDS than white infants,
and Native American babies are approximately two and one-half times as
likely to die from SIDS. The Back to Sleep campaign is being stepped
up, with a special effort to get the message out to these and other
previously underserved populations with the help of community, civic
and religious groups.
Is SIDS inherited?
There may be something
that genetically predisposes an infant to higher SIDS risk. Metabolic
disorders, which can be inherited, have, at times, been mistaken for
SIDS. One such disorder, medium chain acylcoa dehydrogenase deficiency
(MCAD), prevents an infant from properly processing fatty acids. A
build up of these acid metabolites could eventually lead to a rapid
and fatal disruption in breathing and heart functioning. If there is a
family history of this disorder or childhood death of unknown cause
(especially more than one case within a family), genetic screening of
parents by a blood test can determine if they are carriers of this
disorder. If one or both parents is found to be a carrier, the baby
can be tested soon after birth at little cost. This is another reason
why the autopsy is so important. Tests can be done on the tissues of
an infant to identify known metabolic disorders.
I have heard that the
side sleep position is effective against SIDS.
In 1992, the American
Academy of Pediatrics (AAP) recommended both the side and the back
sleeping position to reduce the risk of SIDS. In 1996, however, after
reviewing data from various new studies, they revised their
recommendation to back sleeping as the best position
for infants. These reports indicated that the risk for SIDS is greater
for babies placed on their sides versus those placed on their backs,
perhaps because babies placed on their sides have a higher likelihood
of spontaneously turning onto their tummies. However, both back and
side positions are associated with a much lower risk for SIDS than
stomach sleeping. If the side position is used, caretakers should be
advised to bring the dependent arm forward to lessen the likelihood of
the baby rolling onto its tummy.
Read more
about the Back to Sleep campaign
Won't my baby
choke on spit-up or vomit during sleep if placed on its back?
Many parents place
babies on their stomachs to sleep because they think it prevents them
from choking on spit-up or vomit during sleep. But studies in
countries where there has been a switch from babies sleeping
predominantly on their stomachs to sleeping mainly on their backs have
not found any evidence of increased incidence of aspiration,
pneumonia, choking, or other problems. In addition, the AAP has
reviewed all the scientific literature and found that there is no
additional risk of choking on vomit when babies sleep on their backs.
Which babies
should not be placed on their backs to sleep?
In some instances,
doctors may recommend that babies be placed on their stomachs to sleep
if they have disorders such as gastroesophageal reflux or certain
upper airway disorders that predispose them to choking or breathing
problems while lying on their backs. If parents are unsure about the
best sleep position for their baby, it is always a good idea to talk
to the baby's doctor or other health care provider.
Doesn't back
sleeping cause flat heads?
There is some suggestion
that the incidence of babies developing flat spots may have increased
with back sleeping. This is almost always a benign condition, which
will disappear within several months after the baby has begun to sit
up. Flat spots can be avoided by altering the back sleeping head
position, such as turning the head to one side for a week or so and
then changing to the other. Reversing the head-to-toe axis in the crib
so the baby's head can continually face outside activity (e.g., the
door to the room) helps maintain this position.
Should infants
ever be placed on their tummies?
A certain amount of
"tummy time" while the infant is awake and being observed is
recommended for motor development of the shoulder. In addition,
supervised awake time on the stomach may help prevent flat spots from
developing on the back of the baby's head.
What if my baby
cries and cries and won't sleep in the back position?
Positional preference
appears to be a learned behavior among infants from birth to 4 to 6
months of age. Infants who start out sleeping on their backs from day
one should become accustomed most readily to the back sleeping
position. However, if
you
are having great difficulty with your
infant, try turning him over to his back after he has fallen asleep.
If that
doesn't help, consider the side position, with your baby's lower arm
extended forward to stop him or her from rolling over onto the
stomach. While the side position does not provide as much protection
against SIDS as back sleeping, it is still much better than placing
your baby on his or her tummy.
Could a pacifier
protect a baby against SIDS?
There have.
been a few studies done on the relationship between SIDS and
pacifiers. In each case, it appears that the use of pacifiers is
associated with a decreased risk of SIDS. There are many possibilities
for this finding. Some researchers have suggested that a pacifier may
prevent the infant's tongue from falling back into the throat causing
the air passage to seal. Others have theorized that pacifiers
encourage swallowing and therefore stimulate the muscular development
of upper airways; or that pacifier use prevents an infant from turning
into, a directly prone position. Until further studies explain the
relationship between pacifier use in infants and SIDS, the Back to
Sleep campaign does not make a recommendation for or against their
use. Parents and child care providers are, however, to be discouraged
from taking a pacifier away from a baby who seems to need or want one.
Should sleeping
"wedges" be used for infants?
The American Academy of
Pediatrics has stated that devices designed to maintain sleep position
are not recommended since they have not been sufficiently tested for
their safety and none have been shown to be effective at reducing the
risk of SIDS.
Are there any
advantages or disadvantages to "shared sleeping"
arrangements?
Scientific studies have
demonstrated that bedsharing, between baby and mother, can alter sleep
patterns of mother and baby. These studies have led to a speculation
in the lay press that bedsharing or "co-sleeping" may also reduce the
risk of SIDS. While bedsharing may have certain benefits (such as
encouraging breast feeding), there are no scientific studies
demonstrating that bedsharing reduces SIDS. Conversely, there are
studies suggesting that bedsharing, under certain conditions, may
actually increase the risk of SIDS. There is no basis at this time for
encouraging bedsharing as a strategy to reduce SIDS risk. However,
studies indicate that room-sharing - keeping the baby alongside the
adult bed in his own crib or bassinet - may be protective against
SIDS.
Is enough research
being conducted to determine the cause of SIDS?
Scientists are exploring
the development and function of the nervous system, the brain, the
heart, breathing and sleep patterns, body chemical balances, autopsy
findings and environmental factors. SIDS, like other medical
disorders, may eventually have more than one explanation - and more
than one means of prevention. This may explain why the characteristics
of SIDS babies seem so varied.
SIDS
has been a high priority for research for the National Institute of
Child Health and Human Development (NICHD) at the National Institutes
of Health (NIH). Although SIDS deaths are decreasing, it is important
that NICHD continue to support research aimed at uncovering what
causes SIDS, who is at risk for the disorder, and ways to lower the
risk of sudden infant death. In addition to its grassroots advocacy
program which helps ensure Congressional allocation of adequate
funding for NICHD-sponsored SIDS research, the SIDS Alliance maintains
its own national research program.
The importance of
understanding the causes of SIDS is only underscored by its consistent
place in the headlines. The more we learn about SIDS, the more easily
we will be able to distinguish SIDS from other infant deaths, and
perhaps even one day be able to predict more accurately which babies
are at highest risk.
Is there any research
on home monitors?
Among the many avenues
of research initiated by the NICHD, infant monitoring was thoroughly
investigated by NICHD-funded researchers. In the 1970's and early
1980's, it was thought that monitoring had promise in identifying
infants at risk for SIDS and signaling caregivers when infants have
life-threatening events that may proceed to SIDS. In September of
1986, the NICHD held a consensus conference titled,
"Infantile Apnea and Home Monitoring." After examining all available
research, the consensus panel determined that cardiorespiratory
monitoring is effective only in managing apnea. For the normal
newborn, the risks, disadvantages, and costs of monitoring outweigh
the potential of identifying infants at risk for SIDS.
Today, NICHD funds the
Collaborative Home Infant Monitoring Evaluation (CHIME), a
multi-center study initiated in 1991 that employs a specifically
commissioned monitor with multiple innovative capabilities, including
substantially increased memory, detection of obstructive as well as
central apnea, continuous measurement of blood oxygen saturation, and
assessment of sleep position. The CHIME project will create an
extensive database (which will be made available to the scientific
community) on the development of cardiorespiratory physiology in
normal and in at risk infants. In this context, the study should yield
important new insights regarding the frequency and nature of
clinically significant events as related to breathing pattern, heart
rate, and oxygen saturation.
Does NICHD recommend
the use of monitors to prevent SIDS?
Although some electronic
home monitors detect and sound an alarm when a baby stops breathing,
there is no evidence that such monitors prevent SIDS. The monitors
also pose several disadvantages, including frequent false alarms,
restricted mobility of both infant and parents, and the risk of
electrical injury to young children.
A panel of experts
convened by the National Institutes of Health recommended that home
monitors not be used for babies who do not have an increased risk of
sudden unexpected death. However, the monitors may be recommended in
some cases in which infants have experienced one or more severe
episodes during which they stopped breathing and required
resuscitation or stimulation, if the baby is premature and has
symptomatic apnea, or if the baby has a medical condition such as
central hypoventilation. If an incident has occurred or if an infant
is on a monitor, parents need to know how to properly use and maintain
the device, as well as how to resuscitate their baby if the alarm
sounds.
Haven't there been
stories of misdiagnoses in the news lately?
Research has indicated
that a small percentage of cases originally believed to be SIDS were
actually caused by a metabolic disorder. Other reports indicate that
some SIDS deaths may not actually be SIDS, but might be attributed to
hemorrhaging in the lungs (pulmonary hemosiderosis). On January 17,
1997, scientists at the National Centers for Disease Control and
Prevention (CDC) reported in the Morbidity and Mortality Weekly Report
that a cluster of infants
in
Cleveland had been diagnosed with
pulmonary hemosiderosis, a respiratory illness. Pulmonary
hemosiderosis has been associated with the presence of toxin-producing
air-born fungal spores that can grow in waterlogged homes. The local
coroner examined all deaths among infants under one year of age and
found that a very small number thought to have died from SIDS actually
had pulmonary hemosiderosis. CDC researchers, working with coroners
around the country, are initiating a study to determine how many
previous infant deaths could be attributed to pulmonary hemosiderosis
and wet moldy basements.
Do you have any
estimates on how often SIDS is a misdiagnosis?
Estimates from a few
studies have shown that misdiagnoses account for a very small
percentage of SIDS deaths. In a 1994 policy statement, the American,
Academy of Pediatrics (AAP) estimated that cases of sudden infant
death thought to be SIDS were correct 95-98% of the time.
There have been recent
stories in the news suggesting that some cases of SIDS have been
misdiagnosed and may be hidden cases of abuse and infanticide.
While cases of abuse
misdiagnosed as SIDS grab the media spotlight, it is actually far more
common for the families or caregivers of SIDS victims to be unjustly
accused or suspected of wrongdoing. By medical definition, the term
SIDS is
a
postmortem diagnosis affixed when no
known or possible cause for an infant's death can be found following a
thorough autopsy, death scene investigation and review of the medical
history. Many of the cases reported by the media are decades old,
prior to the implementation of proper autopsy and death scene
investigation protocol. Although there have been instances of cases
that have fallen through the cracks of the medical examiner system,
the overwhelming number of SIDS cases are bonafide medical disorders,
and remain a medical mystery after all known and possible causes,
including child abuse, have been ruled out.
Cases
of
misdiagnosis, while few and far between, serve to underscore the need
to fully investigate, on a case by case basis, each instance of a
sudden infant death and to consider the many possible causes of death,
including but not limited to SIDS, congenital anomalies, metabolic
disorders, unintentional injuries, child abuse, and infections.
Are there state or
national guidelines for investigating the sudden death of infants?
In 1993, the Interagency
Panel on SIDS held a meeting to develop guidelines for death scene
investigation of sudden unexplained infant deaths. A death scene
investigation is an integral part of a SIDS diagnosis to rule out
accidental, environmental, and unnatural causes and to provide
information to researchers on risk factors
for SIDS.
In June 1996, the Panel published guidelines for death scene
investigation that include model protocol and data form for collection
of information by medical examiners, coroners, death team
investigators, and police officers. Although state and local
ordinances define which deaths must be investigated and the extent of
the investigation, these guidelines set the stage for uniform death
scene investigation around the country.
Currently, approximately
half of the states have mandatory autopsy legislation for the sudden
death of an infant which, in many cases, includes support for the
administration of compassionate services for SIDS families. Other
states are in the process of establishing similar legislation. SIDS
families, at the guidance of the SIDS Alliance, have been at the
forefront of efforts urging the funding of research, adoption of
mandatory autopsy legislation, and thorough, but compassionate death
scene investigations. Broader, standardized implementation of autopsy
and death scene mandates are crucial to efforts to differentiate cases
of SIDS from cases of child abuse, and to expand our medical knowledge
about SIDS.
How does a SIDS death
affect the family?
A SIDS death is a
tragedy that prompts intense emotional reactions among surviving
family members. After the initial disbelief, denial, or numbness
begins to wear off, parents often fall into a prolonged depression.
This depression can affect their sleeping, eating, ability to
concentrate, and general energy level. Crying, weeping, incessant
talking, and strong feelings of guilt or anger are all normal
reactions.
Many parents experience
unreasonable fears that they, or someone in their family, is in
danger. Over protection of surviving children and fears for future
children are common reactions. As the finality of the child's death
becomes a reality for the parents, recovery occurs. Parents begin to
take a more active part in their own lives, which begin to have
meaning once again. The pain of their child's death becomes less
intense but not forgotten. Birthdays, holidays, and the anniversary of
the child's death trigger periods of intense pain and suffering.
Children will also be
affected by the baby's death. They may fear that other members of the
family, including themselves, will also suddenly die. Children often
also feel guilty about the death of a sibling and may feel that they
had something to do with the death. Children may not show their
feelings in obvious ways. Although they may deny being upset and seem
unconcerned, signs that they are disturbed include intensified
clinging to parents, misbehaving, bedwetting, difficulties in school,
and nightmares. It is important to talk to children about the death
and explain to them that the baby died because of a medical problem
that only occurs in infants and in rare instances.
Are there any support
groups available for families who have lost a baby to SIDS?
Families are encouraged
to seek counseling and support from local SIDS resources;
additionally, they can seek advice, assistance and information from
the following national resource groups.
Learn more about the
resources SIDS of Pennsylvania can provide in the
Support section
of this website.
Source - SIDS Alliance
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