The information presented here can be confusing, but that is the nature of SIDS. The information I present on these pages is as complete as I could possibly make it and is the result of my reading and researching since my son died in April 1999. It took several months for me to compile all of the information I had into what you see here on the site. I personally do not agree with everything here, but my personal feelings have no place when it comes to information about SIDS. What's available on these pages is truly overwhelming, to have all this information and still not know why our babies continue to die for unknown reasons every single day. Please feel free to share a link to these pages but copying is strictly prohibited. It took a great deal of time and effort for me to pull all of this together, so please do not copy what I have worked so hard to complete. ©Lydia Alves 2001, 2002

Definition of SIDS

SIDS is a term used to describe the sudden, unexplained death of a baby that remains unexplained after a thorough case investigation that includes a complete autopsy, a thorough examination of the death scene and a review of the clinical case history of both the infant and the family. Often the cause of an infant death can be determined only through this process of collecting information, conducting sometimes complex forensic tests and procedures and talking with parents and physicians. When a death is sudden and unexplained, investigators, including medical examiners and coroners, use the special expertise of forensic medicine, and SIDS is no exception. SIDS is the leading cause of death of children 1 month to 1 year of age. It is rare in children under one month of age, but some reports include children as young as 1 week and some older than 2 years. Many more children die of SIDS in a year than all who die of cancer, heart disease, pneumonia, child abuse, AIDS, cystic fibrosis and muscular dystrophy combined, striking 1-2 children for every 1000 live births. Most deaths from SIDS occur by the end of the sixth month with the greatest number taking place between two and four months of age. A SIDS death occurs quickly, and is often associated with sleep, with no signs of suffering.

No one understands why some babies die like this, not even doctors and scientists. SIDS is really another way of saying; "it is not known why these babies died." It means an autopsy failed to demonstrate a cause of death. There really isn't a word to describe how terrible it is for a family to lose a baby to SIDS, and the lack of answers makes it even more horrific and difficult to deal with, if that's even possible. Theories, statistics, and recommendations abound but scientists have yet to pinpoint the cause or causes of SIDS. It is important to note that SIDS continues to be an unresolved problem. Even with the current scientific knowledge, SIDS victims cannot be identified beforehand. Following are some points about the mysterious killer known as Sudden Infant Death Syndrome:

• No one understands why some babies die like this, not even doctors and scientists. If they can't understand it, don't expect that you can.
• A review of medical history, scene investigation, radiographs and autopsy are unrevealing.
• There are no outward symptoms.
• There is no way to tell when SIDS will happen.
• Currently there are no medical tests to detect it.
• The infant may have been suffering from a mild upper respiratory or gastrointestinal infection, and fed before taking a nap or sleeping at night.
• Most SIDS babies die while apparently asleep, but not all SIDS cases. Some babies were awake and alert when they died.
• The baby does not cry out.
• Death happens quickly.
• No one is to blame for the baby's death.
• The baby was not seriously ill, in fact was seemingly healthy.
• SIDS affects families of all races, religions and income levels.
• It's abrupt and unpredictable. No consistent warning signs occur that might alert us to the impending occurrence of SIDS.
• Normally occurring before twelve months of age, SIDS usually occurs in the first four months of life, and rare cases occur between 12-24 months, some even beyond 24 months of age.
• Leading cause of death among infants 1 month to 1 year of life.
• Most often, SIDS strikes in the fall or early spring, but especially during the winter months.
• Sometimes SIDS is referred to as crib death or cot death because most cases occur when a baby is sleeping in a crib, however it must be understood that these terms are not completely interchangable as SIDS is any unknown death and crib death or cot death refers the death of a baby in their crib or cot.
• Thirty years of research has not solved the mystery of SIDS, it has only provided some clues to what might cause it and a list of things believed to be risk factors.
• Minor infections of some sort are almost always found in SIDS babies. On careful post mortem examination, these infections are mild and seem in themselves to be an inadequate cause of sudden death.

SIDS is a diagnosis of exclusion, for deaths when nothing concrete can be found to explain the death, therefore the term SIDS is only affixed once all known and possible causes of death have been ruled out and essentially means, "We have no idea why your healthy baby died."

The abrupt and utterly unexpected death of an otherwise healthy infant to SIDS is a tragic loss. Death happens suddenly and the family has no time to prepare themselves. The baby may also have recently been given a clean bill of health from the doctor. SIDS is considered to be an almost instantaneous event. There may be some movement during the last few seconds of life, accounting for the crumpled or unusual positions in which babies are found. Babies do not cry out and often show no sign of having been disturbed in their sleep. Parents who have witnessed their baby's death have reported that they appeared to die very peacefully in their sleep, that they appeared simply to stop breathing. Researchers believe that SIDS probably has more than one cause, although the final process appears to be similar in most cases. SIDS can not be predicted, prevented or reversed.

In sleep medicine, SIDS is classified as a parasomnia that cannot be classified in other sections. Infant breathing disorders are also included in the parasomnia section because newborns and young infants sleep a great portion of the day and the majority of infant apnea and related respiratory disorders are observed while asleep. Apnea is an inborn feature of infancy that reflects immaturity of the respiratory system rather than cause by a disease. The fear that respiratory instability during sleep may predispose some infants to SIDS should urgently be referred to clinical management. The majority of SIDS cases happen during a time the infant is presumed to be asleep, but even though infant sleep apnea has been implicated as a precursor to SIDS, there is no definite proof of a direct link.

In 1969 researchers agreed to define SIDS as, "the sudden death of an infant or young child which is unexpected by history, and in which a thorough post mortem examination fails to demonstrate an adequate cause of death." Twenty years later, in 1989, scientific knowledge was evaluated and the definition of SIDS was amended to read, "the sudden death of an infant under one 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." SIDS is a classification that is used to describe a deceased infant. It is not a disease, nor can it be a diagnosis of a living baby.

The Importance of Autopsy, Scene Investigation and Case Review

Without a complete autopsy, a careful scene investigation and review of the medical history, a diagnosis of SIDS can not be made. Without these measures, cases of child abuse and neglect may be missed, familial genetic diseases may go unrecognized, public health threats may be overlooked, inadequate medical care may go undetected, and product safety issues will not be identified.

A death should be ruled as due to SIDS when:

• A complete autopsy is done, including cranium and cranial contents, and autopsy findings are compatible with SIDS
• There is no gross or microscopic evidence of head trauma, intracranial injury, cerebral edema, cervical cord injury, retinal hemmorrhage, or mechanical asphyxia
• There is no evidence of trauma on skeletal survey
• Other causes of death are adequately ruled out, including meningitits, sepsis, aspiration, pneumonia, myocarditis, abdominal trauma, dehydration, fluid and electrolyte imbalance, signifcant congenital lesions, inborn metabolic disorders, carbon monoxide asphyxia, drowning or burns.
• There is no evidence of current alcohol, drug or toxic exposure.

The Autopsy

The autopsy provides anatomical evidence through microscopic examination of tissue samples and vital organs. An autopsy is important because SIDS is a diagnosis of exclusion. A definitive diagnosis cannot be made without a thorough post mortem examination that fails to point to any other possible cause of death. Pathologists establish the diagnosis of SIDS by exclusion when they are unable to identify other specific causes for the baby's death. One pathologic feature found in many SIDS babies, which is considered characteristic, but not symptomatic, is intrathoracic petechiae. Finding petechiae on the thymus, heart, lungs, parietal pleura, pericardium, and diaphragmatic pleura is suggestive, but not diagnostic, of SIDS. The petechiae can also be found after an induced airway obstruction, oxygen defecit without obstruction, carbon monixide asphyxia and drowning, but seems to be more common in SIDS. The autopsy will also help scientists uncover the cause because they can examine the evidence gathered from the many SIDS deaths through pathological examinations. An infant death without a post mortem examination should not be diagnosed as SIDS. Cases that are autopsied and carefully investigated but which remain unresolved may be designated as undetermined or unexplained.

Death Scene Investigation

A through death scene investigation involves interviewing the parents, and any other caregivers and family members, collecting items from the death scene and then evaluating that information. Although painful for the family, a detailed scene investigation may shed light on the cause, sometimes revealing a recognizable and possibly preventable cause of death. Investigators should be sensitive and understand that the family may view this process as an intrusion and even a violation of their grief. It should be noted that although the investigation is stressful, a careful investigation that reveals no preventable cause of death might actually be a means of giving solace to a grieving family.

Review of Case History

A comprehensive history of the infant and family is especially critical to determine a SIDS death. Often, a careful review of documented and anecdotal information about the victim's or family's history of previous illnesses, symptoms, accidents, behaviours or other pertinent medical history may further corroborate what is detected in the autopsy or death scene investigation.

In the majority of cases, when an infant younger than one year dies suddenly and unexpectedly, the cause is SIDS. SIDS is far more common than infanticide despite irrational claims that SIDS is just covered up homicide. In some cases, legitimate investigations for possible child abuse have resulted in an insensitive approach to grieving parents or caregivers, but it is vital that people understand that death due to SIDS is much more common than death due to recognized child abuse. It is uncommon for death due to child abuse to be confused with SIDS. It's been estimated that less than 5% of apparent SIDS deaths are actually due to abuse. In one study, only 3.5% died as a result of abuse or neglect. In the absence of evidence of injury or trauma, an immediate diagnosis of "probable SIDS" can be given. This diagnosis conveys to the family that they could not have prevented their infant's death, and is correct about 95% of the time.

Remember - Information provided here is for general purposes only. Only your physician can provide specific diagnoses and advice tailored to your family's needs.