Chapter One
What Is SIDS?

“Remorse and Horror”
An Official Diagnosis
The Highest Risk
How Prevalent is SIDS?
Life-Threatening Events
“The Hardest Thing I Have Ever Had to Do”

Most life-threatening diseases or disorders that strike infants can be clearly defined. Leukemia, for example, is a known cancer of the blood. Meningitis is an inflammation of the fluid in the spinal cord and around the brain. Hepatitis is an infection of the liver. Pneumonia is an inflammation of the lungs and respiratory system. Throughout the years, scientists have studied these and other diseases and have gained significant knowledge about them. But sudden infant death syndrome is nothing like other childhood diseases. When a baby dies suddenly and unexpectedly, and no reason can be found, the death is often attributed to SIDS. According to a March 2004 FBI [Federal Bureau of Investigation] Law Enforcement Bulletin, SIDS claims more infant lives in the United States each year than genetic defects, illnesses, injuries, and homicides combined.

“Remorse and Horror”

Although the SIDS diagnosis is relatively new, the sudden, unexpected death of infants has been recorded throughout history. References to babies dying of unexplained circumstances appear in the Bible, as well as in other historical books and literature. In the first century B.C., the Greek historian Diodorus Siculus wrote about Egyptian mothers whose babies had died

unexpectedly. The women were accused of “overlaying” (smothering) the infants as they slept together in the same bed. Rather than being executed, as was the typical punishment for murder or negligence, the women were condemned to hold the dead babies in their arms for three days and nights. D.L. Russell-Jones explains that this was intended to make the mother “experience her full deserts of remorse and horror.”⁵

It was not until the mid-twentieth century that scientists began to examine unexplainable infant deaths to see if they shared any common traits. Harold Abramson, a physician from New York City, analyzed infant deaths for four years during the 1940s. He found that 68 percent had been sleeping on their stomachs, and nearly half were found with their noses and mouths against bedding. In 1944 Abramson published a paper in the journal Pediatrics, in which he stated that the babies had died of accidental suffocation. Many disagreed with his theory and were angered by it. In the early 1950s pathologists Jacob Werne and Irene Garrow published a paper that de- nounced what Abramson had written. They claimed that mothers whose babies had died were already suffering from indescribable guilt and grief, and blaming infant deaths on suffocation just increased those feelings. Instead, wrote Werne and Garrow, there had to be medical issues involved in the deaths, most likely related to infections.

The first conference on the cause of sudden infant death was held in Seattle, Washington, in 1963. Afterward, the written proceedings pointed out the urgency of studying those deaths in greater detail:

One is startled to find that the number of infants who die of the sudden death syndrome is of a comparable order of magnitude to the number of adults who die from carcinoma [cancer] of the lung. Despite this fact the information is miniscule in comparison to that on carcinoma of the lung. The many questions raised by this conference should provide a stimulus for more comprehensive and detailed studies from this and other countries.⁶

An Official Diagnosis

A second conference on causes of sudden infant death was held in 1969. A lead presenter was J. Bruce Beckwith, a physician from Seattle. Beckwith's objective was to show evidence that most infants who died unexpectedly share some similarities, and he speculated that common threads connected them. Participants engaged in a number of heated discussions but eventually agreed with Beckwith. In order to focus attention and research on the problem, as well as provide a certifiable cause of death, he urged his colleagues to adopt a diagnosis. His suggestion was “sudden infant death syndrome,” because the word “syndrome” implied a combination of causes. The group approved and officially defined SIDS as: “the sudden death of any infant or young child, which is unexpected by history, and in which a thorough post-mortem examination fails to demonstrate an adequate cause for death.”⁷

Although Beckwith was relieved that SIDS was finally an official diagnosis, he was very unhappy with how it was described. He explains: “If a prize were offered for the poorest definition of a disease or disorder in the scientific literature, this one would be a strong contender!”⁸ He thought the description was far too general and should include the various similarities shared by SIDS victims. For example, virtually all the babies studied had been found dead after being put down to sleep. Age was another common factor, as most infants were between two and four months old. Also, far more infant deaths occurred during the winter months than in warmer seasons. In spite of Beckwith's arguments, however, the original SIDS definition remained unchanged for twenty years. It was not until 1989 that the wording was revised to specify infants less than one year of age.

In 1990 the National Institute of Child Health and Human Development expanded the SIDS description, wording it as follows: “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.”⁹ This was more comprehensive than the 1989 definition, which did not call for an examination of the death scene.

The Highest Risk

In the years since SIDS was given a name and a description, scientists have learned more about it. In the process, they have become much more aware of its risk factors. By far, the most prominent risk is the infant's age. An estimated 95 percent of all SIDS cases strike babies who are between one and six months old. Angi Suby, a young mother from Minnesota, lost her three-month-old son, Stephen Paul, to SIDS in July 2007. She had taken him to the doctor for what she thought might be an ear infection, but he said the baby just had a cold. Suby returned home, and as she was taking Stephen out of his car seat, he opened his eyes and flashed a big smile at her. Then he closed his eyes again and went back to sleep. She put him in his bed for a nap—and when she checked on him twenty minutes later, she was horrified to find him dead. Suby was shocked because she and her husband had done everything

Being Prepared

When SIDS strikes, babies abruptly stop breathing. Because of that, many parents install breathing monitors, which register an infant's breathing and/or movement. When the monitor detects a substantial gap in breathing, it sounds an alarm. These devices have reportedly helped to avert tragedy by alerting parents that their infants had breathing problems. Still, however, the issue of breathing monitors is controversial. The American Academy of Pediatrics says no evidence has been found that breathing monitors can prevent infants from dying of SIDS. One concern is that they provide parents with a false sense of security. If parents rely solely on the monitor's alarm, they may not check on their baby as often as they should. In that case, if a monitor did not function properly and failed to detect a gap in breathing, the child could die.

Another concern is that monitors send out false alarms, which can cause parents or caregivers to disregard one that might actually be signaling a problem.

possible to prevent SIDS, and yet their baby had still died. “In just a matter of 20 minutes he was gone,” she writes. “I still see his blue mouth and how limp he was when I held him… . He has been our angel right from the beginning. Now he's our angel with wings. I miss him so much it hurts.”¹⁰

After the age of six months, an infant's risk of dying from SIDS markedly declines. In rare cases, however, SIDS does claim the lives of older babies. Cooper Joshua Eason was two months shy of his second birthday when his father found him dead in his crib. Cooper had been a healthy, happy toddler who was loving and easygoing, a joy to his family. His favorite movie was The Wizard of Oz, which he often watched on DVD while singing along with “Somewhere over the Rainbow.” His unexpected death was devastating for his parents and his three-year-old sister Olivia. His mother describes it as “the most gut wrenching, heartbreaking, nauseating, ridiculous time of my life. My boy, my beautiful perfect healthy 22-month-old baby boy was dead.”¹¹ Yet as tragic as Cooper's death was, for a child over the age of one to die of SIDS is extremely rare. As Beckwith had observed and noted at the SIDS conferences, the largest number of victims are between two and four months old.

SIDS is also more likely to strike babies who are born prematurely, have low birth weight, or whose mothers received no or poor prenatal care while pregnant. Another high-risk group is mothers who are younger than twenty years old. The American SIDS Institute offers this advice: “Don't get pregnant during the teenage years. If you are a teen and already have one infant, take extreme caution not to become pregnant again. The SIDS rate decreases for babies born to older mothers. It is highest for babies born to teenage mothers. The more babies a teen mother has, the greater at risk they are.”¹² SIDS victims share other similarities as well. Boys, for example, are at greater risk of dying from SIDS than girls. An estimated 60 percent of SIDS cases are male infants, while 40 percent are females. Race is also a factor. African American infants are two times more likely to die of SIDS than Caucasian infants. The SIDS cases among Native Alaskan and Native American infants are three times higher than among white infants and two times higher than in the United States as a whole. Scientists say the reason that male and minority infants have a higher risk of being stricken with SIDS is not clearly defined.

How Prevalent is SIDS?

Although babies continue to die of SIDS, the Centers for Disease Control and Prevention (CDC) reports that the number of SIDS-related deaths has decreased significantly since the 1980s. According to the CDC, from 1980 through 1988, 47,932 infants born to residents of the United States died from SIDS. That was an average of 5,326 deaths per year. In 1992 an estimated 4,895 babies died of SIDS. By 2004, the last year for which data are available, SIDS cases had reportedly dropped to 2,247.

Not everyone agrees that those statistics are correct, however. Even though SIDS deaths appear to have declined, the overall number of infant deaths has remained relatively steady since the 1990s. Thus, a number of health-care officials and researchers question whether a decline in SIDS deaths has occurred at all. The CDC's John Kattwinkel explains: “A lot of us are concerned that the rate (of SIDS) isn't decreasing significantly… . It is still a very high killer of babies.”¹³ A report published in October 2007

Unusual SIDS Stopper

The American Academy of Pediatrics recommends that babies less than one year old be given a pacifier for bedtime and naps. The reason? Pacifiers have been shown to help reduce the risk of SIDS. Physicians at the University of Virginia announced in April 2006 that when infants sleep with a pacifier in their mouths, their risk of developing SIDS drops by 61 percent. In a separate study by Kaiser Permanente and the National Institutes of Health, researchers also found that a pacifier helps to prevent SIDS. This is true even if the babies were exposed to risk factors such as stomach sleeping or secondhand smoke. Scientists are not sure why a pacifier lowers SIDS risk. Possibly it helps a baby wake up more easily, and/or perhaps the pacifier positions the tongue in such a way that the airway is kept open.

by Scripps Howard News Service reinforces Kattwinkel's point of view. It details the results of a seven-month investigation of forty thousand infant deaths tracing back to 1992. One finding is that many health officials and medical examiners would not classify infant deaths as SIDS. Even though SIDS is widely accepted as the cause of unexpected infant deaths, some physicians do not believe in the concept of SIDS. Their contention is that SIDS is an invalid diagnosis. So, they write vague terms such as “undetermined cause” or “sudden and unexplained death” on death certificates. Another finding is that twenty-two states rely on coroners to diagnose death rather than medical examiners. Coroners, who are generally not required to be doctors or even have medical training, were 37 percent more likely than medical examiners to use a diagnosis of “undetermined cause” on infants' death certificates.

Angie Steffke is a woman from Indianapolis whose eight-month-old son died unexpectedly in 2003. After the autopsy report stated “undetermined causes,” the grieving mother was left feeling empty and confused. She explains: “It is a horrible, horrible thing to be told that no one knows why my baby died.” A police detective informed Steffke that the state of Indiana no longer used the term SIDS to define unexpected infant deaths. “That really upset me because they want to say that SIDS is happening less often,” she says. “But there are no fewer babies dying. They are just calling it ’undetermined causes.'”¹⁴ Kattwinkel and others who share Steffke's viewpoint fear that the actual number of SIDS cases could be significantly higher than what is being reported.

Life-Threatening Events

Whether SIDS cases are actually declining remains an issue of controversy. Nevertheless, scientists continue to aggressively pursue research to learn more about SIDS in an effort to prevent infant deaths. They are also studying what is known as apparent life-threatening event syndrome, or ALTE. Occurring mainly in babies who are less than one year old, ALTEs do not usually result in death. Instead, they are considered close calls, and are characterized by a frightening collection of symptoms. For no apparent reason, a healthy, active baby just abruptly stops breathing (known as apnea), or begins to choke or gag. The skin of babies stricken with ALTE changes color, becoming pale, bluish, or blotchy. Their bodies often become stiff and then limp, and they appear to be near death. Some sort of resuscitation is typically required in order to revive a baby who has suffered from an ALTE.

Prior to the 1980s pediatricians often referred to such episodes as “near-miss SIDS.” They believed that the baby would likely have died of SIDS if he or she had not been discovered in time. This was never proved, however, and in 1986

the National Institutes of Health Consensus Panel concluded that ALTE could not definitely be linked with SIDS. Thus, the name was changed to apparent life-threatening event syndrome to distinguish the episodes from SIDS and to more accurately reflect what was happening to babies.

Kimberly de Montbrun will never forget the night her three-month-old son suffered a life-threatening event. She had nursed him to sleep, and then she lay down beside him so that she could sleep herself. A few hours later she was suddenly jolted awake by fear. She knew that something was very wrong, as she explains:

My mind was screaming “LOOK AT THE BABY!” I looked over to where he lay beside me, but he was too still. The room was dark, but he glowed a ghostly white in it. My heart pounding out of my chest and a pain in the pit of my stomach, I lay my hand on his chest, reassuring myself that sometimes the eyes play tricks and that he was fine. I leaned my face close to feel the heat of his breath … but it was not there.¹⁵

Fear and dread washed over De Montbrun, and she felt as though she were living in a nightmare. She placed her hand on the baby's chest and rubbed it, but he still did not move or breathe. Then she began rubbing his chest again,

but this time more urgently, the way that you would rub a newborn pup or kitten to get them to breathe. Suddenly he took a ghastly breath in. So deep and sudden, it filled the entire room with its gasp and lurched his tiny chest in the air. It sounded like he was sucking the life back into him, and he was. After that he breathed normally. I held him on my chest, with his ear to my heart to remind him to keep going, and cried. In the morning I took him to our pediatrician, but was anything but consoled. Sometimes these things just happen. Sometimes babies have apnea. Sometimes they resume breathing on their own. Sometimes they don't.¹⁶

After that, De Montbrun lived in fear every time she put her baby to bed, and she wondered if she would ever again be able to sleep normally. She writes:

What if it happened again? My mommy senses had woken me up the first time, but could I count on them again? How could I live with myself if something happened (something … I can't even bring my mind to even think the words) and I didn't wake up? The fear was overpowering. It tainted every moment… . [M]y baby almost died and I felt helpless.¹⁷

The baby never had another episode, but De Montbrun still lived in fear every day. She said it was such a terrifying experience that she probably would always be haunted by it.

Even though no direct connection has ever been found, babies have died of SIDS after they suffered from an ALTE episode. According to physicians Karen Hall and Barry Zalman, studies have shown that between 4 and 10 percent of babies die of SIDS after experiencing a life-threatening event. This is especially true of babies who suffered from other disorders, such as seizures or irregular heartbeat. Hall and Zalman add that babies who experience ALTEs have a greater likelihood of sudden death than those who have not.

“The Hardest Thing I Have Ever Had to Do”

Although scientists know more about SIDS today than they did in the past, it is still baffling to them. They know that most babies who die of SIDS are between two and four months old, although younger and older babies are also at risk. A dramatic drop in SIDS cases seems to have occurred since the 1980s, but even that is in question. Are fewer babies actually dying today of SIDS, or are their deaths just being labeled with other names? No one can say for sure. Another controversial issue is whether apparent life-threatening events are in some way connected to SIDS. Many health officials see no connection; others are not so sure. The only certainty is that SIDS deaths are devastating to those who are left behind. One person who knows that firsthand is Jessica Jackson, whose thirteen-week-old son died of SIDS on December 12, 2007. She describes the agony of that day in the hospital:

They escorted me behind the curtains where my little boy laid there motionless on a gurney wrapped in a blanket. I picked him up and held him and cried and cried and cried. I held him for two hours. I kissed him and sang to him and was looking at him and just hoping that he was sleeping. He was so heavy and so cold. I sat there and held him for two hours until he started turning blue. I then realized I couldn't look at him like this… . I kissed him 3 times symbolizing the phrase, “I LOVE YOU.” I hugged him and then did it again. I turned around and walked away. That was the hardest thing I have ever had to do in my life was to walk away from my child … forever.¹⁸