Introduction
“And this woman’s son died in the night …” 1 Kings 3: 19 (∼950 B.C.)Authors’ note to the reader: This chapter describes and discusses the sudden and unexpected death of otherwise healthy infants. Given that this is the most common cause of death for infants between 1 month and 1 year of age, readers may have been personally impacted by such a death and this chapter may be disturbing to read.
For over 3000 years, people have known that apparently healthy babies could die suddenly and unexpectedly during their sleep. The usual clinical scenario is that a parent or caregiver places a baby down to sleep for an overnight sleeping period or a daytime nap. Sometime later, the infant is found to have died. Generally, these infants were healthy, and there was no sign that something was wrong with the baby or that death would occur. The baby was thought to have been asleep when death occurred. In some cases, the baby has been in the next room, within hearing distance of the parents, who came back to the baby within 30 minutes to find that the baby had died during that short period of time. Yet there was no noise, sound of struggle, or any indication that something was happening. There is no indication that the baby suffered.
When a baby dies suddenly, it precipitates a cascade of first responders. 911 is called. Police, fire, and paramedics respond to the scene. In most cases, the baby is obviously dead. A coroner’s investigator performs an examination of the death scene. All states in the United States require that an autopsy be performed. Autopsies are used to determine the cause of death. An identifiable cause of death can only be found in 10% to 15% of sudden and unexpected infant deaths. This leaves the majority with no identifiable cause of death, and this is the group of babies whose deaths are attributed to sudden infant death syndrome (SIDS).
SIDS is defined as: “The sudden unexpected death of an infant, under one-year of age, with onset of the fatal episode apparently occurring during sleep, that remains unexplained after a thorough investigation, including performance of a complete autopsy, and review of the circumstances of death and the clinical history.” The key features of SIDS are that the death is unexpected and unexplained. SIDS is the most common cause of death between the ages of 1 month and 1 year, yet its cause remains unknown. Prior to 1990, the SIDS rate was 1 out of every 600 live births. Over time, the SIDS rate has fallen to less than 0.5 SIDS deaths per 1000 live births, but it is still the most common cause of postneonatal death.
SIDS has a unique age distribution. SIDS peaks at 2 to 4 months of age, with 95% of SIDS occurring before 6 months of age. Other natural causes of infant death peak near birth and decrease exponentially after that. This unique age distribution has led to the theory that SIDS is not just a collection of babies who died from causes that could not be determined, but rather, infants likely to have died from a similar mechanism. SIDS also impacts different racial and ethnic populations disproportionately, occurring more frequently in infants from indigenous and African-American backgrounds as compared to infants from non-Hispanic white, Hispanic, and Asian-Pacific Islander populations.
Diagnosis
The diagnosis of SIDS can only be made in an infant who has died. There is no known “less severe” form of SIDS in a surviving infant, and SIDS can not be evaluated in any infant prior to death. In order to accurately identify SIDS, there should be an examination of the death scene performed by a qualified investigator and an autopsy performed by a qualified forensic or pediatric pathologist. , Death scene investigation protocols and autopsy protocols have been developed, and the use of these standardized protocols improves the accuracy and consistency of diagnosis. , The diagnosis of SIDS should be used as the cause of death when an infant meets this definition: (1) under 1 year of age; (2) death was sudden and unexpected; (3) death occurred when the infant was thought to be asleep; (4) examination of the death scene reveals no alternative cause of death; (5) autopsy reveals no identifiable cause of death; and (6) the case history does not indicate a medical problem which could have caused the death. ,
There is some variation among medical examiners in the diagnoses which are used to define the cause of death in infants who die suddenly and unexpectedly during sleep. Medical examiners and coroners may use SIDS or diagnoses such as sudden unexpected or unexplained infant death (SUID), sudden unexplained death in infancy (SUDI), undetermined, etc. However, it must be recognized that when diagnosing an individual infant’s death, these terms all mean the same thing; that the death was unexpected and unexplained. In this chapter, the term “SIDS” will be used. , In epidemiological studies, SUID often includes infant deaths due to SIDS as well as asphyxiation, suffocation, and strangulation in bed (ASSB).
By definition, an identifiable cause of death is not found at postmortem examination in victims of SIDS. The autopsy of a victim of SIDS reveals no serious illness that could contribute to the death and no signs of significant stress. However, common postmortem findings include intrathoracic petechiae; pulmonary congestion and edema; minor airway inflammation (not severe enough to cause death); minimal stress effects in the thymus and adrenal glands; and normal nutrition and development. , These findings support that infants were generally healthy prior to death.
Research into possible causes of SIDS
The cause of SIDS is unknown. How are we to understand SIDS? Over the past 50 years, researchers have not been able to pinpoint a plausible abnormality in a physiological system to explain these deaths. Thus, we need to consider how the infant physiology interacts with potential stressors in the environment. Most SIDS researchers believe that SIDS occurs when an infant is in a potentially life-threatening situation, such as sleeping prone on soft bedding. Most infants will lift or turn their head to avoid suffocation. If the infant cannot respond to this situation with a protective response, then there can be a progression through failure of arousal, hypoxic coma, bradycardia, and death. Most infants appear to rescue themselves, but some apparently do not, and they can die.
SIDS is best understood by the Triple Risk Model. There are three overlapping circles representing development, infant vulnerability, and environment ( Fig. 5.1 ). The size of the overlap is the chance of an infant dying from SIDS. Each circle can change in size, depending on the relative contribution of the effect. For example, SIDS is most common between 2 and 4 months of age, so a 3-month-old infant would have a larger developmental circle than an 11-month-old. Similarly, the other circles can change in size. The contributions and interactions between the three parts of the Triple Risk Model to SIDS are explained below.
Development
SIDS is most common in infants between 2 and 4 months of age, , , , at a time when other causes of infant mortality are waning. This distinct developmental pattern suggests that this is a unique time that promotes the risk of SIDS—a developmental window of physiologic vulnerability. The cardiorespiratory and neurologic systems are rapidly developing during the first six months of life. From an engineering point of view, systems in transition are intrinsically unstable. An unstable or immature respiratory control system, with or without high loop gain, can lead to apnea during sleep. However, studies have shown that the developmental pattern of apneas in babies does not coincide with the peak age of SIDS. Furthermore, infants who survive infancy can have long apneas and low oxygen (hypoxia) during sleep. Therefore, the explanation for SIDS is not as simple as babies stopping breathing during sleep. SIDS deaths are increased in babies who reside at altitude over 8000 feet, suggesting that hypoxia may be a contributor to SIDS. Is SIDS due to a catastrophic physiologic crisis? If normal infants do not precisely control breathing, heart rate, and oxygenation during sleep, then SIDS may not require catastrophic physiological crisis. Potentially, small perturbations in physiology or the surrounding environment are sufficient to result in death in an already vulnerable infant.
If an infant has a potentially dangerous exposure to hypoxia or hypercapnia during sleep, the most adaptive response is to move or wake up. Normal infants over 9 weeks of age were less likely to arouse in response to a hypoxic challenge than infants under nine weeks of age. Fifty percent of normal infants studied longitudinally aroused in response to hypoxia at 1 month of age, compared to only ∼10% at 3 months of age, and none at 6 months of age. The loss of a potentially protective hypoxic arousal response coincides with the peak incidence of SIDS and there are changes in infant sleep-wake physiologic mechanisms which decrease this potentially protective physiologic response at the same age that the incidence of SIDS increases. This and other physiologic changes at this age may be a partial explanation for the increased risk of SIDS at around three months of age.
Infant vulnerability
Why do most infants arouse and turn or lift their heads in response to potentially dangerous conditions during sleep, but some do not? The neurotransmitter serotonin has been shown to be decreased in brainstems of infants who died from SIDS compared to those of babies dying from other causes. Serotonin receptor binding sites were also decreased in SIDS. Serotonin is an important neurotransmitter in the brainstem which controls life-support functions. This finding suggests that SIDS victims may have abnormal control of breathing, heart rate response to environmental challenges, and/or arousal. Further, serotonin was decreased both in SIDS infants who had no evidence of possible asphyxia or suffocation contributing to the death to the same extent as those in whom the death scene investigation suggested that asphyxia or suffocation might be present. , Thus, infants with normal brainstem serotonin may have been able to rescue themselves (unless the asphyxia was severe), whereas those who died may have been more vulnerable because of a brainstem neurotransmitter deficit. They may not have been able to mount a sufficiently robust response to rescue themselves. , ,
A continuum of brain abnormality from mild to severe may exist ( Fig. 5.2 ). One could postulate that for an infant with normal brainstem physiology to die, the asphyxial insult must need to be severe. Conversely, for an infant to die without any asphyxial insult, the brain neurotransmitter system abnormality must have been severe. For most infants, who die in the presence of one or more SIDS risk factors or in an unsafe sleep environment, there is probably some brainstem dysfunction, though not enough to have caused death in the absence of environmental hazards. The majority of babies dying suddenly today are found in a sleep environment with some risk factors, but not enough to cause death in every baby. Here, biology interacts with the environment, requiring some increased vulnerability or inability to deal with environmental hazards in order for death to occur. At present, none of these abnormalities can be detected by newborn screening.
Other abnormalities in the hippocampus have also been found in some SIDS victims. Research suggests that this abnormality is different than serotonin deficits. Both abnormalities were found in ∼25% of SIDS victims studied, but most had only one or the other. This suggests that SIDS may have multiple biologic risk factors which can not presently be detected antemortem.
Aside from abnormalities in the brain, certain cardiac disorders may also cause or contribute to death and increase an infant’s vulnerability to SIDS. Cardiac arrhythmias may cause sudden unexpected death, yet not be detected at autopsy. For example, the prolonged QT interval syndrome (LQTS) is a condition, usually genetic in origin, which can cause a fatal ventricular arrhythmia. , Some babies who have died from SIDS may have died from LQTS, although the severity of LQTS can be variable and its result in SIDS will often require contribution from the environment or a secondary event, neonatal gene screening for cardiac ion channelopathies or screening ECGs to avoid these events could be challenging and costly. Nevertheless, cardiac ion channel dysfunction, genetic and/or acquired, may be another mechanism to increase an infant’s vulnerability toward death.
Environment
The infant sleep environment can pose unintended dangers to a sleeping baby. The majority of babies who die suddenly and unexpectedly have a number of risk factors identified at the time of death, and many of these are potentially modifiable. Identifying and eliminating these modifiable risk factors has been associated with decreased SIDS deaths and a reduced risk of SIDS. Risk factors are not causes: most babies with risk factors will not die, and some patients without risk factors will die. However, from an epidemiologic standpoint, those babies with environmental risk factors have an increased risk of dying. Safe infant sleep recommendations have decreased the SIDS rate but have not been sufficient to eliminate SIDS even when every recommendation is followed. There are biological contributors inherent in SIDS deaths which may not be eliminated by following safe infant sleep alone.
Safe infant sleep recommendations
Beginning in the 1980s, a number of environmental risk factors during sleep were discovered which could increase the risk of SIDS or other accidental causes of infant death during sleep. The majority of babies who die suddenly and unexpectedly during sleep do so in the presence of one or more risk factors. In 2016, the American Academy of Pediatrics (AAP) redefined risk factors for unsafe infant sleep and made evidence-based recommendations for decreasing the risk of SIDS, , which are summarized below.
Back to sleep for every sleep
To reduce the risk of SIDS, infants should be placed for sleep in a supine position for every sleep by every caregiver until the child reaches one year of age. Side sleeping is not safe and is not advised. ,
Many studies have been performed over many years in many countries which show that prone sleeping is associated with an increased risk of dying from SIDS. Consequently, in 1992, the AAP first recommended that babies should not sleep prone. The prone sleeping rate fell from ∼70% in 1992 to ∼12% in 2010. The SIDS rate has fallen in parallel fashion with the fall in prone sleeping. Thus, most SIDS researchers equate the fall in SIDS deaths with the decrease in prone sleeping. Side sleeping is unstable, and it is also associated with an increased SIDS risk compared to the supine position. In order to keep a baby sleeping on the side, one will need to prop the baby. Usually, the prop will be placed on the back, ensuring that the baby moves they will roll onto the stomach, which is the most dangerous position.
Prone sleeping was preferred in many cultures because if a baby spits up, the supposition was that the material could simply drain out the mouth, and the baby would not aspirate. However, in the prone position, the esophagus is above the trachea. Thus, if a baby spits up, the material can travel by gravity into the trachea. In the supine position, the esophagus is below the trachea. So, spit up material would have to overcome gravity to enter the trachea. The supine sleeping position does not increase the risk of choking or aspiration, even in the presence of gastroesophageal reflux disease, where the supine sleep position is still recommended.
Once an infant can roll from supine to prone and from prone to supine, infants can be allowed to remain in the sleep position that they assume. Because rolling into soft bedding is an important risk factor for SIDS, parents and caregivers should continue to keep the infant’s sleep environment clear of soft or loose bedding.
Use a firm sleep surface
Infants should be placed on a firm sleep surface covered by a fitted sheet with no other bedding or soft objects. Soft bedding and items in the crib increase the risk of SIDS 4 to 8 times.
Breastfeeding is recommended
Breastfeeding is associated with a reduced risk of SIDS. , Unless contraindicated or not possible, babies should breastfeed exclusively or be fed with expressed milk for 6 months. The protective effect of breastfeeding increases with exclusivity. However, any breastfeeding has been shown to be more protective against SIDS than no breastfeeding.
It is recommended that infants sleep in the parents’ room, close to the parents’ bed, but on a separate surface designed for infants, ideally for the first year of life, but at least for the first 6 months.
The AAP recommends roomsharing, but not bedsharing. Nevertheless, bedsharing is common. Nearly 40% of California parents of infants admitted to “bedsharing always or often.” Some have suggested that bedsharing has a survival advantage for babies. Considerable research has been performed in this area. Bedsharing does increase the frequency and duration of infant breastfeeding when compared to babies sleeping in another room. However, when compared to babies who roomshare with their mother, but do not bedshare, there is no difference in the frequency or duration of breastfeeding. Bedsharing does not improve an infant’s breathing or decrease infant apnea. There appear to be no physiologic benefits of bedsharing. On the other hand, there are many epidemiological studies which show an increased risk of SIDS with bedsharing compared to roomsharing without bedsharing. , , Infant beds or cribs can be placed next to the parent’s bed, to facilitate interaction, but provide the safety of an independent sleep space.
Bedsharing has an increased risk of SIDS, and it is not recommended. Bedsharing is especially unsafe with:
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Infant less than 4 months of age.
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Parent cigarette smoking, even if they do not smoke in bed.
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Parent is excessively tired; such as with sleep deprivation; <4-hour sleep the previous night.
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Parent use of sedating drugs or alcohol.
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Bedsharing with a nonparent or multiple persons.
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Soft or unsafe bed.
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Duvets, pillows, or soft covers.
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Sleeping with the baby on a sofa, armchair, or couch. This is extremely dangerous, and it is associated with a 50 to 70 times increased risk of SUID.
Thus, the AAP specifically recommends that roomsharing, with the infant in a crib in the parents’ room next to the adult bed, is safest and is safer than bedsharing. Infants brought to bed for breastfeeding should return to a separate crib. Do not bedshare if parents smoke cigarettes. Do not bedshare if the parents’ arousal is depressed (alcohol, drugs, sleep deprived <4-hour sleep the night before). Do not sleep with an infant on a sofa or chair.
Bedsharing in an adult bed is associated with a number of known risk factors, such as soft bedding, pillows, and blankets in the bed, etc. These alone can increase the SDS risk when bedsharing. Would bedsharing still be dangerous if all other risk factors were removed? Some health care agencies suggest that bedsharing might be safe when other risk factors are eliminated. There are limited studies of bedsharing without other risk factors, but a few suggest that the risk of SIDS with bedsharing is still increased.
What if parents insist on bedsharing? Based on current information, there is no safe way to bedshare. Public Health messages should not be altered because some people do not want to adhere. Providers should remain firm in what is advised and what is safe. However, providers should be willing to work individually with families who insist on bedsharing to reduce the SIDS risk as much as possible.
Skin-to-skin care is encouraged right after birth and during subsequent days. However, the mother should be awake and able to respond to her infant. The mother-infant dyad should be monitored during skin-to-skin care to assure that it is being done safely. Rooming-in for normal newborn nurseries is also encouraged, but bedsharing should be avoided when the mother is sleepy or not alert and unable to respond to her infant. There is no evidence that placing infants on their side during the first few hours after delivery, rather than supine, promotes clearance of amniotic fluid and decreases the risk of aspiration. Provide safe infant sleep education to parents of newborn infants prior to discharge and safe sleep modeling in the newborn nursery.
Keep soft objects and loose bedding away from the infant’s sleep area to reduce the risk of SIDS, suffocation, entrapment, and strangulation.
Babies should sleep in an empty crib, without blankets or pillows, with nothing covering the head, and without bumper pads.
Consider offering a pacifier at nap time and bedtime
Although the mechanism is unclear, studies have reported a protective effect of pacifiers on the incidence of SIDS. The protective effect of the pacifier is observed even if the pacifier falls out of the infant’s mouth. Because of the risk of strangulation, pacifiers should not be hung around the infant’s neck. Pacifiers that attach to infant clothing should not be used with sleeping infants.
Avoid smoke exposure during pregnancy and after birth
Both maternal smoking during pregnancy and smoke in the infant’s environment after birth are major risk factors for SIDS. Maternal cigarette smoking during pregnancy is associated with a 3 to 15 times increased risk of SIDS. The more cigarettes the mother smokes per day during pregnancy, the higher the risk. After the baby is born, exposure to second-hand cigarette smoke is also associated with an increased risk for SIDS. Because mothers usually spend more time with infants than fathers, maternal smoking after birth carries 6 to 22 times increased risk of SIDS, and paternal smoking after pregnancy carries a 3 to 4 times increased risk. The more hours/day a baby is exposed to second-hand cigarette smoke, the higher the SIDS risk. Babies exposed to 8 hours/day of cigarette smoke have a 10 times increased risk of dying from SIDS. Data regarding second-hand e-cigarette smoke (vaping) are lacking, but this exposure may prove to be even more dangerous than tobacco smoke, as the vapor particles are small and may deposit further into the lungs than particulate tobacco smoke.
Avoid alcohol and illicit drug use during pregnancy and after birth
There is an increased risk of SIDS with prenatal and postnatal exposure to alcohol or illicit drug use. Mothers should abstain from alcohol and illicit drugs periconceptionally and during pregnancy. ,
Avoid overheating and head covering in infants
Infants should be dressed appropriately for the environment, with no greater than one layer more than an adult would wear to be comfortable in that environment. Parents and caregivers should evaluate the infant for signs of overheating, such as sweating or the infant’s chest feeling hot to the touch. Overbundling and covering of the face and head should be avoided.
Pregnant women should obtain regular prenatal care
There is substantial epidemiologic evidence linking a lower risk of SIDS for infants whose mothers obtain regular prenatal care. Pregnant women should follow guidelines for frequency of prenatal visits.
Infants should be immunized in accordance with recommendations of the AAP and centers for disease control and prevention
There is no evidence that there is a causal relationship between immunizations and SIDS. Immunized infants have about half the SIDS rate as those who are not immunized.
Avoid the use of commercial devices that are inconsistent with safe sleep recommendations. Be particularly wary of devices that claim to reduce the risk of SIDS. Examples include wedges and positioners. These have not been proven to be safe or effective. Some have been associated with strangulation of infants.
Do not use home cardiorespiratory monitors as a strategy to reduce the risk of SIDS
The use of cardiorespiratory monitors has not been documented to decrease the incidence of SIDS in healthy infants. These devices are sometimes prescribed for use at home for infants with medical problems related to breathing and oxygenation.
Supervised, awake “tummy time” is recommended to facilitate development and to minimize development of positional plagiocephaly
Some prone positioning, or “tummy time,” while the infant is awake and being observed, is recommended to help prevent flattening of the head and to facilitate development of the upper shoulder strength. Some infants develop positional plagiocephaly from supine sleep. However, this generally resolves spontaneously by 2 years of age.
There is no evidence to recommend swaddling as a strategy to reduce the risk of SIDS.
Infants swaddled prone have a 50 times increased risk of SIDS compared to unswaddled babies sleeping supine. Swaddling should be avoided in:
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Infants over 2 to 3 months of age. There is a danger that when infants begin to roll from supine to prone, the swaddled prone infant cannot regain the supine position.
Success of the safe to sleep program in reducing SIDS deaths
Since 1992, these Safe Infant Sleep recommendations have been phenomenally successful at reducing the SIDS rate. , Only one-third as many babies are dying now as once did. Informing parents about SIDS, and how the risks can be reduced, has been a huge success story in modern health care. However, many parents ignore and/or are unwilling to comply with safe infant sleep recommendations. Part of the problem is that health care professionals do not consistently advocate for safe infant sleep to parents of infants. , Thus, the AAP recommends that “Health care professionals, staff in newborn nurseries and NICUs, and childcare providers should endorse and model the SIDS risk reduction recommendations from birth.” Parents of infants are more likely to adhere to safe infant sleep recommendations if they receive this advice consistently from their primary care provider and other health professionals.
Subsequent siblings of SIDS victims
When the parents of a baby who died of SIDS have a subsequent child, they often are afraid that this new baby may also die. These subsequent siblings of a baby who died from SIDS are not at increased risk for SIDS. They have the same risk of SIDS as the general population. There is no testing, such as sleep studies, electrocardiograms, or genetic studies, which can predict if a subsequent sibling of a SIDS victim is at increased risk for SIDS. Thus, such tests are not recommended. Nevertheless, parents who have experienced the death of a baby from SIDS frequently ask what they can do to reduce the risk of their subsequent baby from also dying from SIDS. Parents should do everything that any parent does to optimize the health of their baby. Once the baby is born, parents should follow “Safe to Sleep” recommendations. These recommendations have been shown to decrease the number of babies dying from SIDS.
Parent grief
When a baby dies from SIDS, the health care team must recognize that the parents and families of these babies are additional victims of this tragedy. Although the death of any child is painful, SIDS deaths are unique. SIDS deaths come quietly, suddenly, and unexpectedly. These babies were usually happy and healthy. They were tucked safely into their cribs for an overnight sleep or a daytime nap. Sometime during that sleeping period, they died. Health care professional must be prepared to be a source of strong support for these families. Reaching out to the family who has experienced a SIDS death is critical. Newly bereaved SIDS parents are devastated and may be paralyzed by grief. The importance of the support and education from a trusted provider cannot be over-emphasized.
Many states require that public health nurses visit families who have had a SIDS death. The purpose of these visits is to provide grief support and SIDS education. They are not part of an investigation into the possible cause of the baby’s death. When done correctly, they are extremely important in helping SIDS parents in their grief journey. SIDS parent support groups also provide peer support. Most parents will say that talking to another parent who has experienced the same tragedy that they are going through is the most powerful and helpful source of support. When possible, newly bereaved parents should be referred to a local or online SIDS parent support group.
The death of a child is a death that is feared but not expected. A parent whose baby has died is one of the most traumatic losses any person can experience. This trauma is intensified by the final cause of death diagnosed as SIDS, which means that the infant’s death was sudden, unexpected, and unexplained. The lack of an explanation for the death of a presumably healthy baby leaves parents, family members, and caregivers with intense feelings of grief, guilt, and confusion. Most parents experience profound and intense guilt, and they blame themselves for their baby’s death.
Because the SIDS death is unexplained, parents often scrutinize the pregnancy and the baby’s brief life for things they may have done to cause the death, or at least not prevent it. Almost always, the things parents identify and worry about have no relation to their baby’s death.
Providing parents with a theoretical understanding of what is known about SIDS helps to reduce their guilt. The triple risk hypothesis helps parents to realize that their baby’s death was not due solely to environmental hazards. Many SIDS victims have subtle abnormalities of the brain. , Some vulnerable babies may never die if they are never challenged by environmental hazards. When a SIDS death is associated with risk factors, that baby may have had increased vulnerability or a decreased ability to deal with environmental challenges compared to other babies. , These factors are beyond the parent’s or caregiver’s control, and this is important to emphasize to reduce a parent’s guilt.
Helping parents reduce their feelings of guilt and self-blame is the most important counseling action health professionals can take. Anger and guilt are common emotions for parents of SIDS victims. They may feel angry with their God, their spouse, their children, or with others, whether involved or totally separate from the death. Grief is a natural and normal reaction to loss. It is a response that is physical, emotional, spiritual, and psychological. Newly bereaved parents need to know that all of these feelings and thoughts are normal, and they should decrease with time, especially with support.
In mothers of babies who died from SIDS, prolonged grief disorder (PGD) is common, and it may persist for many months after the infant’s death. Daily intrusive emotional pain or yearning was found in 68% of mothers, and yearning was significantly associated with emotional pain. Parents report difficulties discussing their experiences of loss and seeking assistance to support the grief. These findings are important to guide those helping to address a mother’s grief months and even years after a SIDS death. The symptoms of PGD should not be considered as a “disorder,” but rather they may be a normal or common expression of grief in these mothers. Prolonged grief in the fathers of babies who die from SIDS has not been extensively explored and specific studies on same-sex parents and adoptive parents are similarly lacking. Anecdotally, providers who experience a SIDS death in their practice may also experience prolonged grief, questioning the adequacy of their care and wondering if they “missed” something that contributed to their patient’s death.
Linking newly bereaved parents with other parents of SIDS victims is one of the most helpful things that one can do. It allows newly bereaved parents and caregivers to talk with someone who has experienced a similar infant death. Speaking with a parent whose baby died years ago gives the newly bereaved parent hope that their highly emotional crisis state is temporary and that their pain will ease over time. The newly bereaved parents can see how other parents have coped with their grief. It shows them that their lives will not always be this sorrowful or this hard. However, these parents are forever changed. One parent said: “We all are changed by the loss of a child or grandchild. Our grief becomes a part of who we are now. It becomes our ‘new normal.’”
Father’s Grief: While mothers are often the main focus for support and expressions of sympathy, a father’s loss is no less. Fathers typically develop very protective feelings about their families, so that the sudden death of their precious baby can feel overwhelming and undermine their self-esteem. Because traditional masculinity is characterized by strength, it leaves little room for grief, sadness, breaking down, or confusion.
Some fathers find that going back to work or resuming other activities helps. Other fathers may have great difficulty returning to work where they are expected to function productively. Dealing with other fellow workers, who do not understand grief, may just add strain and pressure.
Many fathers are helped by attending parent support meetings and being connected to other fathers who have also experienced infant loss. Similar to mothers, relating to other fathers who have experienced a death of an infant from SIDS allows them to not feel alone in their grief, and it also allows them to see that there is hope for a less painful future.
Sibling’s Grief: When a baby dies from SIDS, and there are other children in the home, they will also experience grief. Some children need a chance to talk about what happened and how they are feeling. Children’s questions about death should be answered as honestly as possible in an age-appropriate way; their questions should not be ignored. Children will create answers for questions not acknowledged. Children tend to cope with death by “acting out” their feelings and fears rather than talking about them. They may not always understand “why” they hurt, but they can clearly identify their pain. All children react differently, but some of the most common expressions of grief in children are anger, feelings of abandonment, guilt, temper outbursts, regression, increased dependency, silence, withdrawal, depression, behavior changes, and disinterest in previously engaging activities.
Siblings of SIDS victims need to be reminded that nothing they did, said, or thought caused the baby to die, and nobody is to blame. They should know that SIDS happens only to babies. It can not happen to them or to grown-ups.
A child’s understanding of their sibling’s death changes as they mature. Thus, children may ask the same questions at different ages but will need different answers as they mature.
Childcare Providers: Many parents return to work around 3 months after their baby’s birth. This age is also the peak incidence of SIDS. Thus, many infants die in childcare when the parents were away from their infants. Childcare providers will also experience guilt and loss, especially if there has been a longstanding relationship with the child and/or parents. However, there are additional implications for the childcare provider. If they are a licensed childcare provider, there will almost certainly be an investigation by childcare licensing. Depending on the findings, their childcare license may be at risk. Only a few states have childcare regulations enforcing safe infant sleep practices. Therefore, in some cases, a child may have died in a high-risk sleep environment. Childcare providers should universally receive education about safe infant sleep, and regulations enforcing these would also be beneficial.
When an infant death occurred in childcare, the relationship with the parents is highly variable. Because parents were not present when their baby died, they may have additional guilt, which may escalate the intensity of emotional reactions toward the childcare provider, both positive and negative. Sometimes, parents will blame the childcare provider for the death, especially if the baby was found in an unsafe sleep environment. Sometimes, the childcare provider also experiencing grief can be supportive to the parents. There is no roadmap about how to help both parents and childcare providers, and health care professionals will need to individualize their approach to support each.
Summary
In summary, SIDS is the most common cause of death in infants between the ages of 1 month and 1 year, yet the cause remains unknown. The cause is best understood as an interaction between development, infant vulnerability, and environmental hazards. This triple risk model, and recent research, suggests that SIDS deaths occur when these three elements coincide. Some vulnerable babies may never die if they were never challenged by environmental hazards. When a SIDS death is associated with risk factors, that baby may have had increased vulnerability or a decreased ability to deal with environmental challenges compared to other babies. These factors are beyond the family’s control, and this is important to emphasize in order to reduce parental guilt. A SIDS death can not be predicted prior to death. SIDS can not be prevented. However, public health interventions have successfully decreased the number of babies dying from SIDS. SIDS has not been eliminated, and we still are faced with addressing the needs of parents of SIDS victims, surviving family members, and childcare providers when involved. All health care providers must feel empowered and responsible for sharing and modeling safe sleep recommendations.
References
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