Charles A Corr & Donna M Corr. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1. Thousand Oaks, CA: Sage Reference, 2003.
In this chapter, we examine the phenomenon of sudden infant death syndrome (SIDS), which is the leading cause of death for infants between 1 month and 1 year of age in the United States. We begin by describing some of the typical experiences of parents, grandparents, and other family members when a SIDS death occurs. We then present a formal definition of SIDS and a discussion of its incidence. We go on to describe SIDS-related research and the “Back to Sleep” campaign, which appears to have reduced the number of U.S. SIDS deaths by about half during the 1990s. We also examine some typical experiences and tasks for first responders, other professionals, and volunteer helpers in cases of SIDS deaths. Finally, we explore bereavement, education, and support after a SIDS death and close with a brief conclusion. Following the chapter text, we provide a list of three sources for further information about SIDS.
Experiences of Family Members in a SIDS Death
Most often, the parents of a child who dies from SIDS are relatively young and happy to have had this newborn come into their lives. They may be from any religious, ethnic, cultural, or socioeconomic background. Some parents who lose a child to SIDS have had other children previously, but equally often the child who is lost is the couple’s firstborn.
Usually, the baby who dies from SIDS is between 2 and 4 months of age. Often, the infant has displayed no evidence of any special health or developmental problems and in his or her parents’ view is a healthy, happy baby. Frequently, a physician has seen the child not long before the SIDS death, either for a routine checkup or for an examination associated with a slightly elevated temperature and other symptoms suggesting a mild viral infection. As a result, the parents later report that they felt no special anxiety about the health or future of their child.
On the day of the death, the child may have been a bit fussy or may simply have been put down for a nap or for a night’s sleep. Many times, the child’s parents later recall that they were grateful that the child was sleeping, so that they could have a few hours’ break from caring for the infant’s needs as well as an opportunity to give their attention to other responsibilities or just get some rest. But when they next checked on the infant, they immediately recognized that something was wrong.
Typically, the baby is found lying on his or her stomach, as if asleep. But the parents notice that everything is still, much too still; there are no movements or signs of breathing. When the parents pick the baby up, there is no response. It is a terrifying and terrible moment.
Often, parents try to initiate cardiopulmonary resuscitation (CPR) in an attempt to restart the baby’s heart and breathing. Frequently, they call 911 or other emergency telephone numbers to reach out for assistance. An emergency operator may tell them how to perform CPR or suggest other things they can do, even as emergency medical technicians and paramedics are dispatched to the family’s location.
The parents may alternate between periods of vigorous action and agitated conversation and times of shock and stricken silence. When first responders arrive, they may ask the parents and any other people present to step back and give the professionals some room to attempt to save the baby’s life. As those efforts call forth no response from the infant, the parents may gradually begin to weep and become quieter and quieter. Sometimes, they may withdraw a bit further from the scene of the attempted rescue, perhaps turning to each other or remaining apart; in other instances, they may urge the emergency workers to make more and stronger efforts at resuscitation. The baby’s parents may at this point reach out to their own parents or other relatives and friends to share what has happened and to seek assistance in such practical matters as providing transportation to the hospital or staying with other children in the home.
Soon after it becomes clear that the baby cannot be revived, a physician will likely examine the baby, either at the scene or at a local hospital. After the infant has been pronounced dead, the physician will usually explain to the parents that an autopsy will be required to determine the cause of death. The doctor may suggest that it seems likely the baby died from sudden infant death syndrome. Before they leave their child, the parents may be given an opportunity to spend some time with the baby in private and to hold his or her lifeless body.
In the days that follow, the parents will learn that SIDS is neither predictable nor preventable. Unless there is evidence to the contrary, they will be reassured that they did nothing to cause this terrible event and there was nothing they failed to do that might have avoided it. Ordinarily, at this point, the parents are still stunned by the swiftness and finality of what has happened. They may find themselves going over and over the events of the previous hours and days, as well as the details of the child’s last visit to a pediatrician.
In the midst of their own pain, it may be difficult for each parent to comfort the other or for both to console the dead child’s siblings, grandparents, or others affected by the death. Some parents may find it difficult even to talk about the baby’s death with others, including those who have many questions and some who may suspect foul play on the part of the parents. Other parents who lose a child in this way may find that they have a need to talk incessantly about the baby and about his or her death. Most parents find that disposing of the baby’s toys, clothing, and other items is a very difficult task; they may not be able even to think about it for some time.
Eventually, a postmortem examination and a thorough investigation will be conducted, and a diagnosis of SIDS will be confirmed. If the parents can discuss the diagnosis with the pathologist or medical examiner, this may help to settle some matters and answer some of their questions, but it is difficult for most SIDS parents not to experience much uneasiness and guilt. Historically, society has often treated parents as if they deserve all or a significant portion of the blame when an infant dies suddenly and unexpectedly. Indeed, parents often blame themselves or each other for many different reasons, such as the following: because they believe that one or both of them somehow contributed to the death or failed to protect the child from death; because they believe that one or both of them failed to live up to their own expectations or to those of society in their roles as parents; because they assume that the death is some form of retribution or punishment for their having violated a moral or religious standard; because of something they did or did not do at the time they discovered that their child was dead; or just simply because they are alive and they do not believe it is normal for a parent to outlive his or her child. In the aftermath of a SIDS death it is not at all appropriate for the parents to take on such blame and guilt. Therefore, it is extremely important in all cases of SIDS deaths that those who are in a position to do so tell the parents repeatedly that they are not responsible for the death of their child and that, given the current state of knowledge, no one could have prevented the death.
Many other events follow from the life-changing impact of a SIDS death. Most often, there will be a funeral or memorial service and a burial or cremation. Everyone affected by the death will engage in some type of mourning process or efforts to cope with what has happened and with its many implications. Older siblings of the dead child will need information and support as they, too, try to cope with the death and with what it means for them and for their family. The parents may need to think carefully about whether or not they should consider the possibility of a subsequent pregnancy. Even children who are born into a family after a SIDS death will eventually need someone to explain to them why the absence of an older brother or sister they never knew is such an enduring presence in the family’s life.
Much of this will be awkward and difficult. No one in the family’s circle can go back to the familiar routines of life as it was before this death. So much that had previously seemed clear and bright as the parents looked to the future with their precious infant may now appear confusing and unsure. The family can develop “new normals,” and life can be good again, but it will never be the same as it was before.
Definition of SIDS
Sudden infant death syndrome—often referred to as SIDS, but also termed crib death in the United States and cot death in some other English-speaking countries—is technically defined as “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” (Willinger, James, and Catz 1991:681). Three aspects of this definition are worth noting. First, an accurate diagnosis of this syndrome requires a thorough investigation, including a painstaking autopsy (preferably performed by a medical examiner or forensic pathologist who is experienced in diagnosing infant deaths), along with a careful examination of the historical and circumstantial situation in which the death occurred (including interviews with parents and others involved in the care of the infant, collection of items from the scene of death, and meticulous evaluation of all the information obtained). Hasty or incomplete diagnoses can sometimes confuse SIDS with deaths resulting from child abuse or other causes (American Academy of Pediatrics 2001). This can compound the burdens placed on parents and other survivors of SIDS if they are wrongly accused of child abuse, just as it may cloak abusive situations under the more benign diagnosis of SIDS.
Second, a diagnosis of SIDS is essentially a “diagnosis by exclusion”—that is, a diagnosis that one makes by ruling out all other possible causes and then recognizing the distinctive patterns of this cluster of events. A “syndrome” is precisely that—a familiar constellation of events arising from an unknown cause. This is perhaps the most frustrating aspect of SIDS, because we all want to believe that every event has a cause, and we are likely to find it difficult to accept that modern medical and scientific techniques are currently unable to tell us what that cause is for SIDS. In fact, SIDS deaths may result from more than one cause acting jointly or separately, but the main point of an exclusionary diagnosis is that no conclusive explanation of the cause(s) of SIDS has yet been established, either in general or in particular cases.
Third, it is also the case that at present no definitive diagnostic indicators unmistakably identify recognized abnormalities in an infant that are sufficient to cause a SIDS death. Nevertheless, some biological, clinical, and historical or circumstantial markers are commonly found in this syndrome, including (a) tiny red or purple spots (minute hemorrhages or petechiae) on the surface of the infant’s heart, in the lungs, and in the thymus; (b) an increased number of star-shaped cells in the infant’s brain stem (brain stem gliosis); (c) clinical suggestions of apnea or pauses in breathing and an inability to return to normal breathing patterns; and (d) circumstantial facts such as a peak incidence at 2 to 4 months of age declining rapidly almost to nonoccurrence beyond 1 year of age. Markers such as these, when identified by a competent, thorough, and experienced physician, justify the recognition of SIDS as an official medical cause of death.
Incidence of SIDS
During most of the 1980s, SIDS accounted for the deaths of approximately 5,500 infants per year in the United States (Corr et al. 1991; see Table 1). From 1988 to 2000, however, death rates from SIDS fell by more than 62% (from more than 1.4 to just over 0.5 deaths per 1,000 live births) in the United States, and the number of SIDS deaths declined to 2,151 in 2000 (Minino and Smith 2001). This reduction in SIDS deaths has contributed to the lowest infant mortality rate—6.9 infant deaths per 1,000 live births in 2000—ever recorded in the United States.
In terms of the overall number of live births each year, the three leading causes of death in infancy (that is, during the first year of life) are congenital malformations, disorders related to short gestation and low birth weight, and SIDS. Approximately two-thirds of all infant deaths occur during the perinatal and neonatal periods (at the time of birth and during the first 28 days of life, respectively), mostly as a result of complications related to pregnancy and birth, as well as developmental problems. SIDS is the leading cause of death in the United States among infants between 1 month and 1 year of age, with a peak incidence from age 2 months to 4 months.
Researchers have drawn attention to other aspects of the incidence of SIDS deaths, but the variables examined have not yet been sufficient to establish differential diagnoses, screening procedures, or preventive measures for SIDS. In fact, SIDS is a sudden and silent killer, often associated with sleep, but apparently involving no suffering. Characteristically, SIDS deaths show a pronounced peak in number during the colder fall and winter months of the year, especially during January through March in the United States and 6 months later in the Southern Hemisphere. Epidemiological studies suggest that SIDS is somehow associated with a detrimental prenatal environment, but infants who are at risk for SIDS cannot be distinguished from those who are at risk for many other health problems. In general, at-risk infants include those with low birth weight or low weight gain and those whose mothers were less than 20 years of age, were anemic, had poor prenatal care, smoked cigarettes or used illegal drugs during pregnancy, and had histories of sexually transmitted disease or urinary tract infection. But none of these factors is sufficient to predict how, when, why, or if SIDS will occur.
SIDS appears in families from all social and economic groups, although African American infants are two to three times more likely to die of SIDS than are Caucasian American babies, and Native American infants are approximately three times more susceptible than whites. Approximately 60% of all SIDS deaths involve male infants; about 40% occur among female infants. The largest portion of SIDS deaths (approximately 70%) occurs in infants between 2 and 4 months of age, with most (approximately 90%) taking place by 6 months of age.
It is extraordinarily difficult to conduct research on SIDS; researchers who attempt to do so face many problems that have long frustrated scientific investigators (Hillman 1991). For example, there are no living patients to study because the first symptom of SIDS is a dead baby. In addition, risk factors for SIDS are not sufficiently strong or specific enough to permit researchers to identify high-risk groups as subsets of the general infant population in which they can follow the natural history of the disease with smaller numbers of subjects. And there are no naturally occurring animal models for SIDS. As a result, SIDS is currently unpredictable and unpreventable, although it is possible to modify some risk factors for SIDS deaths.
In terms of causes, most researchers believe that babies who die of SIDS are born with one or more conditions that make them especially vulnerable to stresses that occur in the normal developmental life of an infant, including both internal and external influences. The leading hypothesis for study is delayed development of arousal, cardiorespiratory control, or cardiovascular control.
Meanwhile, research based on epidemiology and pathology has dispelled numerous misleading and harmful myths about SIDS (for example, it is not contagious and does not run in families) while also ruling out many factors that have been thought at various times to be the causes of SIDS. For instance, we now know that SIDS is not the result of child abuse. Likewise, SIDS is not caused by vomiting and choking, minor illnesses such as colds or infections, or immunizations such as those involved in the DPT (diphtheria, pertussis, and tetanus) vaccines. Nor is SIDS the cause of every unexpected and sudden infant death.
The “Back to Sleep” Campaign
In the early 1990s, the findings of a research study conducted in Tasmania suggested that infants might be at less risk for SIDS if they were put down for sleep on their backs (supine) or sides, rather than on their stomachs (prone) (e.g., Dwyer et al. 1995). That idea ran contrary to the long-held view that infants should be put down to sleep prone in order to reduce the risk that they might regurgitate or spit up fluids, aspirate them into their airways, and suffocate. Some health care professionals and laypersons still seem to believe that prone sleeping is best for an infant, but the latest research suggests that infants who sleep on their stomachs are at far greater risk of SIDS than they are of other problems.
In April 1992, the American Academy of Pediatrics (AAP) Task Force on Infant Positioning and SIDS concluded that it is likely that infants who sleep on their backs and sides are at least risk for SIDS when all other circumstances are favorable (for example, when the child is sleeping on a firm mattress and is not overheated, without loose bed covers or soft toys nearby). As a result, the AAP recommended that “healthy infants, when being put down for sleep [should] be positioned on their side or back” (p. 1120).
In June 1994, the U.S. Public Health Service, the AAP, the SIDS Alliance, and the Association of SIDS and Infant Mortality Programs jointly initiated the “Back to Sleep” campaign across the United States. This campaign employs literature, the mass media, and other avenues to raise professional and public awareness about the importance of infant sleep positioning as a way to reduce SIDS deaths (Carolan and Fernbach 1994; Willinger 1995). One example of a local organization’s simple but effective implementation of the campaign comes from SIDS Resources, Inc., in Missouri, which distributes to new mothers tiny, infant-sized T-shirts with the following direction printed on the front: “THIS SIDE UP…while sleeping.”
Subsequently, the AAP (1996, 2000) revised and strengthened its recommendation by emphasizing that supine is the preferred position for infant sleep, both at night and during naps. The AAP has acknowledged that it is acceptable to allow infants to sleep on their sides, because that is significantly better for them than sleeping on their stomachs, but side sleeping without proper support is a less stable position for an infant and thus is less preferred than back sleeping.
Dramatic and sustained reductions in SIDS deaths in the United States and many other countries have been associated with initiatives like the “Back to Sleep” campaign. Together with other proactive interventions, such as good prenatal care (proper nutrition, no smoking or drug or alcohol use by the mother, and frequent medical checkups beginning early in pregnancy) and the maintenance of a smoke-free environment after the baby is born, these initiatives have had the effect of greatly lowering the risk that infants will die from SIDS.
Unfortunately, initiatives like these have not been applied equally among all racial and cultural groups in the United States. For example, less-than-optimal prenatal care is all too prevalent in some sectors of our society. Moreover, researchers have found that African American mothers are “still significantly more likely to place their infants prone” (Willinger et al. 1998:332). This reluctance to place infants on their backs for sleep appears to be directly correlated with the less significant declines in SIDS death rates among African American infants compared with infants in other groups in the United States (Willinger et al. 2000).
Typical Experiences and Tasks for First Responders, Other Professionals, and Volunteer Helpers
First responders in the case of a possible SIDS death may include an emergency medical dispatcher or 911 operator, who is likely to be the first person to hear a parent or other family member’s plea for help; police officers or sheriff’s deputies; firefighters; and emergency medical technicians, paramedics, and ambulance drivers. Most of these will be paid professional emergency service providers, although some may be volunteers, family members, and friends. First responders may also include staff members in an emergency or critical care department of a hospital, clinic, or other setting to which the infant is brought for help. Other professionals who may become involved in the case of a SIDS death include the medical examiner or coroner, a pathologist, a local prosecuting attorney, members of the clergy, and funeral service personnel. Staff at a local or regional SIDS counseling center may also play a role in helping bereaved parents and family members.
In the remainder of this section, we draw on the work of Guist and Larsen (1991), who have described three distinct but interwoven areas of responsibility for first responders, other professionals, and all other persons who take part in interventions related to a possible SIDS death. These three areas encompass clinical tasks, legal tasks, and human tasks that carry through from the first moment of the crisis until well into long-term follow-up. Although these types of tasks overlap and all have some role to play throughout the SIDS experience, for the most part each type of task has a prominent role at a particular point in the changing situation associated with SIDS.
Whatever the circumstances, the primary clinical tasks of anyone to whom a possible SIDS infant is presented are the same as those called for in any instance in which a child is reported to be without pulse and not breathing. Because the crisis may involve the death of an infant and the cause of the crisis is unknown, these immediate clinical tasks are action oriented and practical in nature. First responders will hear the family’s initial plea for help and mobilize intervention resources in response to that plea. Those who arrive at the scene or make the initial face-to-face contact with the family and child will strive to proceed in a calm and deliberate way, projecting an attitude of confidence and efficiency and exhibiting concern. Without making assumptions as to what is wrong or why the infant may have died, first responders will make a prompt physical assessment of the infant and the scene. They will also begin basic life-support measures or continue such measures if they have already been initiated. At the same time, they will try to obtain a history of the events that led to the call for help and determine what may be the best plan of intervention. Often, emergency responders will quickly transport the infant to a hospital emergency department (frequently in the company of at least one parent).
At first glance, it may appear obvious to experienced professionals that the baby is already dead and may have been dead for some time. Nevertheless, they will want to ensure that every reasonable effort is made to resuscitate the infant and that no option that might offer some life-saving potential is overlooked. Once CPR is initiated, it is usually continued until the infant is pronounced dead by some proper authority.
To fulfill these clinical tasks, first responders need to be prepared to respond to a sudden, unexpected infant death at any time. This requires that they be competent in the technical skills of life support, proficient in the use of the equipment involved, and aware of how to conduct themselves at the scene.
In a case of SIDS, clinical tasks normally culminate in an autopsy, the purpose of which is to arrive at the most accurate determination of the cause of death possible, so that medical personnel can communicate that diagnosis to the parents and appropriate officials in the most effective ways.
Legal tasks that apply at the outset to first responders in a SIDS case arise from established policies regarding the care and transportation of victims of sudden infant death and their family members. These policies typically provide guidelines for such matters as who responds to pediatric medical emergencies, what is to be done at the scene, by whom, how and where the infant is to be transported, who may or should accompany the transport, who is contacted to investigate the death, and who is responsible for pronouncing death. Even if the infant has been moved from the position in which he or she was first discovered and the parents or other adults present have difficulty recalling how events took place, the first responders’ careful observation of the scene and accurate reporting on its details are essential to the investigation that follows.
In a SIDS case, a thorough and sensitive investigation by a medical examiner or coroner is essential to determine the actual cause of death, to rule out child abuse, and to protect the public from criminal behavior. Where it is applicable, “sudden infant death syndrome” is the appropriate medical language for a medical examiner or forensic pathologist to enter as cause of death on the death certificate (as opposed to less precise terminology, such as “cardiorespiratory arrest” or “undetermined cause”), and the finding should be reported as such to appropriate officials.
Guist and Larsen (1991) note the importance of compassion in the human tasks carried out by all who become involved in a SIDS death:
No one can prevent the pain a family will feel or protect them from experiencing grief following the sudden, unexpected death of an infant. If the professionals who assist with the infant and interact with the infant’s family are compassionate and knowledgeable, there is potential for the surviving family to achieve a more healthful outcome from this difficult experience. (P. 155)
In large part, the human tasks that need to be accomplished in a SIDS case have to do with the ways in which the clinical and legal tasks are carried out. The human tasks for first responders and other professionals arise from their knowledge about the very painful impacts of cases of sudden infant death, the diverse ways in which individuals from different religious or cultural backgrounds may respond to such losses, and the resources available in the community that might help families coping with SIDS deaths (such as local or regional counseling services or support groups for bereaved parents). With this background in mind, first responders will seek to obtain essential information about what happened to the infant in ways that are least disturbing to the parents or other adults involved. It is not the role of first responders to fix blame for what may have happened or to focus on what the parents or a caretaker may have done or failed to do. The human tasks for first responders are to listen and observe, offer understanding and support, and take care not to make family members feel guilty about the death of the baby.
First responders can best obtain needed information and respect common responses to these difficult situations by asking open-ended questions and practicing active listening. It is especially important that they recognize that parents may blame themselves for what has happened in ways that are not realistic, and that they should not take parents’ statements of self-blame as reliable acknowledgments of responsibility. While resuscitation efforts continue and until death is properly pronounced, it is essential that first responders keep the parents and other family members informed and assure them that everything that can be done is being done. Throughout, as Guist and Larsen (1991) note, “extreme care must be taken by the emergency responders not to suggest by word, facial expression, tone of voice, or nonverbal actions that any blame or suspicion is being attached to any individual. The family may misinterpret the slightest gesture or casual comment” (p. 147).
Whenever possible, first responders should display sensitivity to the family’s needs by allowing at least one parent to accompany the infant during transport in an ambulance. For family members cannot come along in the ambulance, first responders can help to arrange assistance with transportation from a neighbor, relative, or other emergency responder. It is not acceptable for professionals to permit a distraught parent to drive from the scene to the hospital alone. If other children are at the scene, first responders may need to help make arrangements so that they are not left unattended; these professionals can also provide the children with a short explanation of the situation in an age-appropriate manner.
Many of the care providers who become involved in a SIDS death will have only brief contact with the infant’s family members. For that reason, smooth transitions from one care provider to another are essential. Whenever emergency responders are withdrawing from the situation, family members need to know who is leaving and who will be available to provide them with continued support. In particular, it is important that care providers create a bridge between first responders and those who will provide longterm, continuing support, such as members of the clergy, funeral directors, and other counseling personnel. It is also important for all who provide care to remember that even when bereaved parents and other family members have forgotten many details of the event, they will frequently remember those whom they perceived as being especially helpful, as being unsupportive, or as making the experience more painful.
Once death has been pronounced, the emphasis in the human tasks of care providers will be on helping the parents and other family members meet their own needs in a situation for which they likely will have had no previous experience. For example, helpers can provide a quiet, private place in which the parents can express their grief and be with other loved ones. They can encourage the parents to help wash and clothe the body of their infant if they wish to do so, as well as to see, hold, or simply be with the infant, perhaps in the company of the child’s siblings and other family members. Helpers can be company for the parents and other family members in these circumstances, if it seems appropriate. Helpers can also take care to handle the infant’s body as though the child were still alive, and not as an impersonal object. For example, a helper can wrap the infant in a blanket and carry him or her to the parents, rather than taking the parents to a room in which the infant’s body is lying on a table without any attendant or supervision. Whether or not they choose to see or hold their infant, the parents may wish to cut a lock of the baby’s hair or keep other mementos, such as the child’s blanket. Helpers might also take it upon themselves to take photographs of the infant, either to give to the family before they leave to go back home or to include in the infant’s medical record, so that the pictures might be available to the parents if they should come to want them at a later time.
Helpers should be prepared to acknowledge and legitimate a wide variety of feelings and responses on the part of the infant’s parents, siblings, and other family members. Grief and mourning are highly individual experiences for persons of all ages and backgrounds. There is no right or wrong way in these matters; nothing is to be excluded or ruled out of bounds unless it causes emotional or physical harm to the bereaved family members or others. Helpers can also provide oral and printed information about SIDS, about infant death, and about loss and grief. In addition, they can offer practical assistance in matters such as arranging for transportation back home, contacting other family members, and calling a funeral home. Further, they can arrange for spiritual support and make appropriate referrals for follow-up with a local SIDS support network. By acting in sensitive and knowledgeable ways, members of the clergy, funeral service personnel, and experienced SIDS counselors can do much to ensure that this very difficult time in the lives of SIDS parents and families is not made worse. Through their actions, they can demonstrate awareness that the short life of the infant was and remains an important part of the life of the family.
Helpers can also work to make certain that the family is told the preliminary cause of death as soon as possible and that the parents are provided with a postmortem report as soon as it is available.
Finally, it is appropriate for first responders, professionals, and all others who become involved in a SIDS death to acknowledge their own responses to such a shocking event. Helpers should honor their own honest reactions and appreciate their individual coping strategies; they should have ready access to resources for additional support and should be willing to draw on those resources as needed.
Bereavement after a SIDS Death
Any sudden, unexpected death threatens our sense of safety and security because it forces us to confront our own mortality. This is particularly true in an infant death, because the death of a very young child is often perceived as a disruption of the natural order of things. According to this view, children are not supposed to die, and adults are expected to predecease their offspring. The lack of a discernible cause, the suddenness of the tragedy, and the involvement of the legal system also help to make a SIDS death especially difficult for all those it touches, leaving a great sense of loss and a need for understanding on the part of others. As many have noted, a SIDS death is “a cosmic slap in the face” to parents, grandparents, other adults, and siblings who had previously delighted in the child’s birth and growth, and had plans for his or her future.
In addition to tasks that all bereaved persons face in coping with the losses they have experienced and their grief reactions to those losses, individuals who are bereaved by SIDS face additional challenges associated with the death of a child, a sudden death, and a death for which there is no known causal explanation (National SIDS Resource Center 1997). No postdeath intervention can be expected simply to dismiss such difficult challenges. However, classification of an infant’s death as an instance of SIDS—naming it as an occurrence of a recognizable syndrome—may help provide some partial framework for understanding. This diagnosis can also go a long way toward diminishing unrealistic guilt on the part of survivors, who might otherwise think that they somehow contributed to the death or that they could have done something to prevent it. SIDS survivors, especially parents and grandparents, are likely to require a great deal of information about the syndrome and extended support in their bereavement.
Contact with others who have experienced similar deaths may be particularly useful. Sometimes this can be arranged on a one-to-one basis, but most often it is achieved through one of the many mutual-support groups that have sprung up across the United States in recent years. As a general rule, a SIDS-specific group is likely to have the most to offer to those affected by a SIDS death, but when such a group is not available, an organization for bereaved parents and family members (such as the Compassionate Friends, Bereaved Parents of the USA, or Empty Arms) or a broader bereavement support group sponsored by a local community agency (e.g., a hospice program, a funeral home, or a religious organization) can be helpful.
Explaining a SIDS death to a surviving child or subsequent sibling demands empathy, skill, and role modeling in grief. An older child in the family can be told in simple, concrete, age-appropriate terms that the baby’s body simply stopped working, that the doctors and others who were involved do not know exactly why that occurred, and that no one was able to make the baby’s body work again. To these messages should be added very clear communications such as the following:
- Nothing that you did or said or did not do or say, or that any of the rest of us did or did not do, caused your little brother or sister to die.
- The doctors and researchers are working as hard as they can to try to find out the cause of this type of death and to learn how to prevent it.
- Until that happens, although there are many things that we do not know about this type of death, we do know that it results from a medical problem, it is very rare, and it never happens to older children like you or to adults, so you should not worry about those possibilities.
- We are very sad and have many strong reactions to the death of your brother or sister, and we know that you are likely to have similar reactions, so you should not be surprised if they occur.
- We will share our reactions with you, and we want you to share your reactions with us at any time now or in the future so that none of us is alone in our grief.
- We love you and will be here to take care of you and to talk with you whenever you want to do so about this sad event.
Education and Support Related to SIDS
There is a great need at many levels in our society for education and support in relationship to SIDS and its implications. First responders, day-care providers, funeral directors, clergy, and all others who become involved in SIDS deaths need to understand the differences among the clinical, legal, and human tasks that we have described. Helpers also need to recognize how priorities shift among these tasks from the time the crisis occurs to the time when the call for help is first answered and on to the time of follow-up. Counselors of all kinds must appreciate the special needs of those who are bereaved by SIDS. They are likely to have distinctive needs for information, both about SIDS and about their own grief reactions and coping processes (Fuller, Barnickol, and Mullins 1991). For example, counselors should know how to validate the experiences of SIDS survivors, enable them to obtain access to medical resources, and introduce them to other SIDS survivors or bereavement support groups.
Counselors also need to help individuals who are affected by a SIDS death to be patient with family members and others who are experiencing their own unique bereavements. Parents and close family members are especially likely to welcome assistance in determining how to manage important dates and milestones in the future and in addressing questions related to a subsequent pregnancy when that is a possible option. Adult survivors may need help in explaining SIDS losses and grief reactions to siblings and other children along the lines we have suggested above.
When parents who have experienced a SIDS death subsequently have another baby, they may wish to consider using an electronic home monitor that detects when a baby stops breathing and sounds an alarm. Although the presence of such a device may be consoling for the family, there is no evidence that using a monitor can prevent SIDS. In general, physicians recommend the use of such monitors only under special circumstances (e.g., the infant has experienced one or more severe episodes when breathing stopped and resuscitation or stimulation was required, the infant was born prematurely and has demonstrated apnea or temporary pauses in breathing, or the infant is a sibling of two or more SIDS infants). Furthermore, parents who opt for using a monitor need to know how to operate and maintain it properly if it is not to become an additional burden on them. They also need to appreciate the very real possibility of false alarms, and they need to know how to resuscitate their baby if the monitor does indicate a dangerous halt in breathing.
SIDS support groups and bereavement support groups in other settings (e.g., those sponsored by religious institutions, hospice programs, or other community organizations) may need guidance in meeting the special needs of those affected by SIDS. More broadly, the general public needs to be more fully informed about SIDS and about how the needs of those who have been bereaved by SIDS can be met in the most effective ways, especially in relation to the distinctive features associated with the death of a child and with a sudden death.
As in all deaths, often the most important thing that friends, coworkers, and others who have contact with a family affected by SIDS can do is simply be present—that is, not withdraw from the family. Friends can expect that the aftermath of the event will be difficult for family members and may play itself out in different ways over what may seem to them to be—but in fact is not—an unusually lengthy period of time. They can help just by listening attentively as individual family members go over the events of the death repeatedly and work through their specific reactions to their loss. In direct contacts and in expressing condolences in writing to a SIDS family, it is wholly appropriate for friends to share their shock and sadness over the death of the infant (family members will likely be experiencing similar feelings) as well as their frustration in not knowing what to say or do about this inexplicable death (family members will share these reactions also).
Bereaved family members often appreciate it when others share any memories of the infant and/or legacies from his or her short life—especially insights or experiences of which the family members may not have been aware and that they might want to add to their own store of memories. Families are also ordinarily grateful when friends show a real willingness to help out in practical ways (not just saying, “Call me if you need anything”). Such help might include assistance with grocery shopping, preparing food, doing laundry, cutting the lawn, or temporary child care for surviving children. It is very important that others not say, “I know how you feel” in a well-intentioned but misguided effort to reach out to members of a SIDS family, or speak in ways that unintentionally minimize the loss (e.g., “You really hadn’t gotten to know the baby very well” or “You can always have another baby”). Nothing can replace the infant who died; another child is just that—a separate person, not a substitute for a SIDS baby.
Sudden infant death syndrome is a challenge to everyone it touches, whether they are parents and family members of an infant whose death is caused by SIDS, first responders and others who become involved in supporting those parents and family members, medical examiners and forensic pathologists who are called upon to determine that the death did result from SIDS, members of bereavement support groups who offer their services to a SIDS family, friends and coworkers who interact with a SIDS family after the death, or students and members of the public who hear about the puzzling subject and simply wish to understand it better. We can all hope that a day will come soon when the cause or causes of SIDS will be known, when it will become possible to screen for those infants who are at high risk for SIDS and other causes of sudden, unexpected death in infancy, and when it will be possible to prevent these deaths. In the meantime, it is essential that we strive to improve the understanding of this phenomenon and its implications as much as possible and to share that understanding as widely as we can. Improvement in the assistance offered to family members and others affected by SIDS is critical, as is an expansion of efforts to reduce the risk of SIDS through the “Back to Sleep” campaign and other initiatives described in this chapter, along with advances in research, education, and bereavement support.