SIDS (Sudden Infant Death Syndrome) is the sudden and unexpected death of an apparently healthy infant under the age of one which remains unexplained, even after the performance of a complete autopsy, examination of the death scene and a review of the clinical history. SIDS most often occurs during periods of sleep.
SIDS is a recognized as a medical disorder. However, it is not a diagnosis, but rather a name given when all known causes of death have been ruled out.
SIDS is not predictable and not preventable. It is the number one cause of death for infants under the age of one. It peaks between the ages of two and four months (70 p. cent of cases). 90 p. cent of SIDS happen before the age of six months.
While risk reduction strategies, including safe sleep practices, have helped lower the rate of SIDS in recent years, they cannot alone prevent SIDS. Risk factors are not causes. SIDS can happen to babies with known risk factors, as well as babies who have no known risk factors. And it can still occur, even when families and caregivers follow all recommended risk reduction strategies.
The only way that we will one day be able to prevent SIDS deaths is by finding, understanding and treating the underlying biological causes of SIDS.
Many researchers think that what we now call SIDS will one day be found to be a number of disease processes that, on the surface, appear to be similar. Current advances in molecular medicine indicate that an underlying biological abnormality due to genetic or molecular disorders (such as defects in cardiac or neuronal ion channels) may be responsible for a large proportion of sudden infant deaths.
SIDS cannot be predicted or prevented at this time.
SIDS is not caused by neglect or child abuse.
SIDS does not appear to cause a baby suffering.
SIDs is not caused by suffocation, vomiting or choking.
SIDS is not contagious or infectious.
SIDS is not considered hereditary.
SIDS is not caused by vaccinations or by toxic gases.
SIDS is not a new medical problem, it has been around for many generations.
SIDS occurs rapidly and silently, usually during periods of sleep.
SIDS probably has more than one cause, although the final death mechanisms appear to be similar.
SIDS is not anyone's fault.
What does the autopsy show in SIDS?
As mentioned, the autopsies of babies who die of SIDS show no cause of death. Even very experienced pathologists who perform autopsies on these babies can find no adequate explanation. Their respiratory tract may be mildly inflamed. A slight excess of fluid may appear in the air spaces of their lungs (although not enough to account for the death). It is also likely that pinpoint hemorrhages, called petechiae, will show up in the thymus gland and the membranes covering the lungs. But these did not cause the baby to die.
In perhaps 15% to 20% of all infants who have died suddenly, the cause of death may prove to be an unsuspected cardiac malformation or a severe, rapidly developing infection. A diagnosis of SIDS, however, is reserved for those deaths that cannot be explained.
An autopsy can answer the family's questions about whether a baby's death was due to a known cause. If the cause is known, the death, by definition, cannot be placed in the category known as Sudden Infant Death Syndrome. In this case, it will be in the category of Sudden Unexpected Infant Death.
It should be pointed out that in many cases of sudden unexpected infant deaths, there are no overt anatomical abnormalities, and hence a negative autopsy), since the defects involve submicroscopic, cellular and molecular mechanisms. These defects can only be detected by methods of modern cellular and molecular biology. Therefore, it is not surprising that such defects are missed by most forensic centres in Canada performing autopsies on infants who died suddenly and unexpectedly, since these forensic centres are using investigative tools of the last century.
What do we know about SIDS from research?
A pattern of recurring features has emerged from the results of many SIDS research studies underway around the world. We know that these sudden deaths are most likely to happen between the ages of 2 and 4 months, although both older and younger babies also die of SIDS. Usually the babies seem healthy or perhaps just recovering from a cold. Yet they are found dead unexpectedly. Research has found that babies who sleep on their stomach or their side and babies whose mothers smoked during pregnancy are both at greater risk for SIDS.
How are SIDS deaths identified?
Investigations into the cause of death take time. Therefore, parents often receive a temporary diagnosis of SIDS and are referred to associations and support groups for help until the results of the investigation are available through the final autopsy report.
The pathologist performing the autopsy carefully examines all organs and regions of the body, searching for abnormalities that can explain the infant's death. If after receiving the reports of all investigation parties the coroner or medical examiner still cannot determine the cause of death, a diagnosis of SIDS should be retained. When a cause of death is identified during the investigation, the final diagnosis will pertain to that cause (for example, infection, heart malformation, and genetic disease).
Why are some babies who die suddenly, unexpectedly and with no identified cause of death not called SIDS victims?
Since 2012, coroners in most Canadian provinces have made a unilateral administrative decision to stop using the term SIDS to qualify infant deaths for which a cause cannot be found. Instead, they are using the term “undetermined”. While the term SIDS implies a medical condition not yet understood, using the term “undetermined” means that no manner of death has been excluded, whether a natural cause of death such as an infection or SIDS, an accidental death, or even a homicide, and this without a proof of wrong doing by the caregivers.
In recent years, there has also been a tendency by Canadian coroners to categorize risk factors as causes of death, and to exclude a diagnosis of SIDS whenever a known risk factor is present, and referring to those deaths as “unsafe sleep” related deaths. This approach implies that the infant could still be alive if risk factors had not been present and puts unjustified and unfair blame on the families.
We strongly believe that this is a regressive step and we do not support this new approach. Remember that risk factors are not causes of death, and that babies do not die of “unsafe sleep”. There is no evidence that the infant would not have died without the presence of the risk factors.
If your baby died suddenly and unexpectedly, and no definite cause of death can be established, then you are a SIDS parent, independently of what your infant’s autopsy report concludes. We advocate for equal and compassionate counseling and advice for all families who lost an infant suddenly and unexpectedly, regardless of the “official” categorization of the cause of death.
And remember that Baby’s Breath supports or offers services to all parents who have lost an infant suddenly and unexpectedly, no matter what your infant’s autopsy report says, and whether or not a cause of death is established.
Was the baby's death anyone's fault?
No one is at fault. When a baby dies as the result of a car accident or a known disease, we can understand what has happened. But in the case of SIDS, when even doctors cannot explain the cause, the death seems mysterious. Many parents blame themselves, or even each other at first; they feel they must have done, or failed to do, something. While it is understandable that parents feel this way, such guilt is inappropriate.
Families sometimes blame a caregiver or their doctor. Frequently the baby was examined shortly before death, and the doctor found no signs that would lead anyone to suspect that the baby might die. But SIDS cannot be predicted. Many doctors and nurses have lost their own babies to SIDS. It can happen to infants even in the hospital.
Can anyone tell which infants are at risk of dying of SIDS?
No, while much has been learned about SIDS, we are still baffled as to its cause or causes and how to prevent it. Researchers are now able to identify certain common elements about the babies who die, about their parents, and even about the death itself. These are referred to as "risk factors". But this does not mean that the majority of SIDS cases have several or even one of these elements in common - only that they have been seen more frequently in infants dying due to Sudden Infant Death Syndrome than in other infants.
It is important to remember that associations and risk factors are not causes. Clearly, the vast majority of SIDS babies were well nourished, well cared for, and in apparent good health prior to death.
Many researchers think that what we now call SIDS will one day be found to be a number of disease processes that, on the surface, appear to be similar. Because we cannot pin down a cause of SIDS, no definitive tests are available that would enable doctors to identify a baby at special risk. Since we know of no particular condition that exists prior to death, parents as yet have no treatment, let alone a sure preventive measure.
Did the baby suffer?
Most of the SIDS babies appear to die undisturbed in their sleep. Usually, at the time no one is even aware of the event. It is likely that such deaths are without pain or suffering; no outcry or struggles have been reported.
Did the baby choke on vomit?
Sometimes stomach contents or blood-tinged froth may be found around the infant's mouth and nose, or on the bedding. This does happen during a rapid death process, but it is not the cause of death. Rather it is the result of the act of dying. Note, too, that babies who sleep on their backs are not at greater risk of choking.
Would it have helped if the baby had been breastfed?
Breastfeeding, although recommended for many reasons, provides no guarantee against SIDS. SIDS occurs in both breastfed and bottle fed infants. Indeed, unexpected sudden deaths have occurred since ancient times, when all babies were breastfed.
Is SIDS infectious or contagious?
No, other family members are not at risk. Whatever the cause of SIDS, it is not transmitted from the infant who died to other babies or children. Parents and caregivers do not need to take special precautions when caring for other children or adults in the family.
Is SIDS a rare occurrence?
SIDS is rare before one month of age, peaks at 2 to 4 months, and is also rare after one year of age. It takes the life of 1 of every 2,000 live-born babies in Canada. Babies of aboriginal background are at greater risk of SIDS.
Three babies die of SIDS every week in Canada. The rate varies from place to place and from year to year. SIDS also occurs throughout the world.
Why do the coroner and police investigate?
These parties are obliged by law to investigate all unexpected deaths to ensure that they are due to natural causes. A thorough investigation that includes police involvement is therefore undertaken.
Would home monitors help?
Many people have heard about the home apnea monitors that can be attached to the baby or mattress to track heart rate and breathing. A monitor is not a treatment; it can only alert the caregiver to a potential problem. Although some parents may be reassured to know that their baby's breathing is being continuously assessed, some families find the full-time commitment to operating the device and the psychological stress that can result a heavy burden. These should be balanced against any possible benefits. Babies die even while on a monitor. Unfortunately, the research of the last 30 years provides no evidence that the incidence of SIDS decreases with the use of monitors.
What are the effects of SIDS on the family?
Whenever someone we love dies, we go through a period of grieving and mourning. It is a natural and necessary process. People grieve in many different ways. After the first shock and numbness have worn off, most parents feel depressed and have difficulty concentrating; they are excessively anxious about the safety of their other children or worry about caring for them. Sometimes parents feel they may be losing their minds.
Anger, while often denied, is another common grief reaction. It may be directed at the other parent, the doctor, the babysitter, the other children, even the SIDS baby or society in general. Anger may be expressed or suppressed; each individual copes with it in a personal way. Sometimes parents begin to argue as a result of the anger, or to feel distant from each other.
These and other upsetting symptoms are normal reactions. With time, however, they become less intense and, eventually, they go away. It is good for parents to express their feelings, both to others and to each other. When they feel low and depressed, it often helps to talk to another parent who has had a baby die from SIDS. People who have had a similar experience can understand and reassure the grieving parents. They can explain that things do eventually improve. Baby’s Breath is able to put bereaved parents in touch with each other.
Other people such as clergy, health professionals, and professional counselors may be able to help. Often too, the parents' families and friends can be supportive; they can help by allowing the parents to talk about their baby, by listening without trying to "fix" the parents' pain. If the parents' grief seems excessive or prolonged, further professional help may be needed.
How should the baby's death be discussed with the other children?
Children are affected by a death in the family as well. But, because they don't always understand or talk about death in the same way as an adult, they may deny it or appear unconcerned. The youngest ones, who cannot tell of their fears or may not understand explanations, mostly need to be reassured of their parents' continuing love and affection and of their own safety. Older children should be told that the baby died of SIDS. They must be allowed to express their emotions and discuss their fears.
Just as parents feel the loss and have doubts, guilt, and sorrow, so do children. Children need an honest explanation; they need to know they were not responsible for the baby's death. They need reassurance that they will not die in the same way. Children may not show their grief in the same way as adults. They may act out, have nightmares, revert to bedwetting, or become clingy. They may also have problems at school.
What if other people were caring for the baby?
Sometimes relatives, babysitters, or professional childcare providers were in charge of the baby when the death occurred. All caregivers should receive the same information about SIDS as do the parents. They should have an opportunity to express their feelings and speak to a counselor if they so wish. Parents may tend to blame the caregiver or themselves for having left the baby with someone else. And the caregivers may blame themselves.
Grandparents should be included in those who receive information about SIDS. They often have a special relationship with the baby as well as with the parents.
It is important that everyone understands the facts about the syndrome. No blame should be laid on anyone. Often, the distribution of accurate literature will help to explain the tragic situation.
Should the parents have another baby?
This decision is one that only the parents can make. It is wise for parents to take their physical health and emotional state into consideration. Some people decide to have another baby soon after the loss of their child; others may decide to wait. The decision should be made when both partners feel ready. It is important to remember that the next baby cannot replace the one who has died. The next baby is a new and unique person.
Can it happen again to the same family?
According to the best available information, SIDS is not hereditary. It is very rare for it to occur more than once in a family. Many parents have brought up healthy children both before and after their baby has died of SIDS. However, it is true that the risk of SIDS is higher if another sibling has died of SIDS.
What about information from the media?
Many people are misinformed about SIDS. Well-meaning friends sometimes repeat misinformation to parents, causing them needless distress. Articles and items about SIDS frequently appear in the news media. They often imply that "the cause" has been discovered, or a "breakthrough" has occurred. Television programs may sensationalize SIDS in presenting a story. If you read anything in the newspapers or hear anything on television or radio that is misleading, notify Baby’s Breath. Its members will attempt to clarify the accuracy of the report.
What research is happening?
Medical researchers are working to discover the cause of SIDS so that it can be eliminated. They are also trying to identify which babies are at special risk, so that customized preventive approaches can be applied. Specific areas of study include the investigation of the many factors that control such basic functions as heart rate, breathing, temperature control, and other automatic functions. Other research examines how best to help grief-stricken families adjust to such a tragedy.
One key task of current research involves examining the normal development of healthy infants so that we can better understand how SIDS babies differ. Many SIDS researchers feel that these infants are born with some problem or defect that makes them more vulnerable to situations encountered in daily life. SIDS, however, probably has more than one overriding, single explanation.
Today, we hold many pieces of the puzzle. But we must piece together the total picture if we are to understand, and eventually prevent, Sudden Infant Death Syndrome.