Published November 24, 2007 by
Although the death of any infant is tragic, the death of an infant from sudden death syndrome [SIDS] is perhaps the most traumatic. SIDS has caused the death of infants since human race began. In biblical times, it was called overlaying [because it was thought that the mother had lain atop the baby in her sleep]; it is now also known as cot death or crib death. Even though the causes of most diseases that have afflicted the human race eventually have been discovered, SIDS remains a mystery. It takes the life of an estimated eight thousand babies every year in the United States; based on this estimate, more than twenty babies in this country die of SIDS every day. SIDS deaths occur in all families from all socioeconomic backgrounds, and from urban as well as rural areas. Autopsies have shown no consistent findings to indicate a cause of death. Although parents cannot anticipate or prevent SIDS, they need to be informed about it in case their child or the child of someone they know becomes a victim of a SIDS death.
Through the years, many theories about the cause of SIDS have been proposed, but none has been proved. Some of the more commonly investigated theories are:
Other theories include such things as minor birth defects, botulism, nutritional deficiencies, immunizations and lead intoxication.
The age at which SIDS most commonly occurs [two to six months of age] is a time in the baby’s life when a number of events are occurring-for example, the baby may be switched from breastfeeding to bottle-feeding; the baby may be receiving immunizations; or the family may be socializing more. Researchers seeking a cause of SIDS have at various times tried to establish a connection between these and similar events and SIDS. For example, a baby may have died of SIDS shortly after a switch to cow’s milk, raising a question of an allergy to cow’s milk as a cause. SIDS may have occurred within days of the baby’s receiving an immunization or being exposed to a person with a respiratory infection, which raised the question of immunizations and respiratory illness as a cause. But no link has been found between such ordinary events in the baby’s life and SIDS.
Attempts to find a cause of SIDS are hampered by underreporting and misreporting of SIDS deaths. Only recently has SIDS been considered a separate disease entity, which means that it now can be given as an official cause of death. SIDS deaths have been, and in some instances still are, reported as caused by suffocation, pneumonia, and other ailments. In some jurisdictions, an autopsy is automatic for any death of unknown cause. In other areas, the parents must give permission for or request an autopsy. Many parents do neither, and the death may be officially listed as from another cause. Even if an autopsy is performed, there are few standardized procedures and reporting systems for SIDS and the findings may be reported differently from one area to another. Because of this poor reporting, linking factors may be missed.A number of factors have been associated with a higher incidence of SIDS death. SIDS occurs more often in boys than in girls. [However, the overall infant death rate is also higher for boys than girls.] SIDS occurs more often in black babies than white babies. [Black babies in general are at a greater risk of death than white babies.] SIDS occurs more often in families with a low income. [but deaths from other causes do also] SIDS occurs more often in illegitimate births than in legitimate births. SIDS occurs more often in low-weight babies than in those with higher birth weight. Babies from multiple births [twins or triplets] are at greater risk for SIDS than those from single births. The incidence in SIDS in babies with a sibling who died of SIDS is slightly higher than the incidence of SIDS in the general population. It is even higher for the twin or triplet of a SIDS baby. SIDS appears to occur more often in crowded dwellings. Mothers of SIDS babies seem to have had fewer prenatal visits than other mothers; they often have no prenatal care or care only in the last three months of pregnancy. Mothers of SIDS babies younger than mothers of babies who die of other causes. Most SIDS deaths occur between November and March. None of these risk factors has been established as a cause of SIDS and, as noted, many of these factors are also associated with a higher incidence of infant deaths from other causes.
The infant mortality rate from all causes has been declining in the
The first symptom of the disease is the death of the baby. The death occurs quickly and without being noticed. The baby apparently dies during sleep and without suffering. In the few reported instances in which a SIDS death was observed, the baby simply stopped breathing. In the most common situation, an apparently healthy baby is put to bed and is later found dead. Parents have found their baby dead while sleeping in the same room, while driving with the baby in a car seat, or even while holding the baby in their arms. In one instance, the baby’s doctor had just finished a routine examination when the baby stopped breathing. The doctor, nurse, and mother were all present, but attempts to resuscitate the baby were not successful. The autopsy revealed no cause of death except SIDS.
Dealing with Guilt
The parents of a SIDS baby also become victims of the disease. Their grief and guilt may be overwhelming. Unlike parents whose baby was ill before dying, the parents of a SIDS baby have no warning or time to prepare emotionally for the loss of their child. Feelings of guilt and recrimination are all normal first reactions. The parents immediately begin to wonder what they did or did not do to cause the death. But-in the absence of risk factors-there has never been evidence that any special care or lack of it, can prevent or contribute to a SIDS death.
The emotional trauma experienced by the family frequently results in the family’s disintegration. Rates of divorce, substance abuse, and serious psychological problems are high in SIDS families. Fathers of SIDS babies may seek excuses not to be home, such as working longer hours. They tend to internalize their grief and may have difficulty talking about the baby and his or her death. Mothers frequently wish to talk about their loss but have difficulty finding someone to talk to. They may undergo physical changes that are difficult to handle, especially if they were nursing the baby. While fathers may have a strong desire to “replace” the lost child, mothers may be less inclined to have another baby as soon as possible. In reaction to the SIDS death, both parents may become overly protective of their other or subsequent children.
The trauma suffered by other children in a SIDS family-or other caregivers, such as babysitters-may go unrecognized as everyone concentrates on the parents’ loss. Yet siblings may suffer from the loss and guilt feelings, sometimes to the extent that psychological counseling is necessary. Siblings old enough to have helped care for the baby would have established a special bond to the baby that makes their loss very real and very big. Also, they are apt to develop guilt feelings about what they might have done to cause the death, especially if they tended the baby shortly before the death. Younger siblings, who probably experienced brief periods of jealousy when they wished the baby would go away, may have difficulty coping with a feeling that they somehow caused the baby’s death. In addition, young siblings may witness attempts to resuscitate the baby without understanding what is happening. They may interpret the pounding on the chest or other emergency measures as punishing the baby for having been bad. When the baby is pronounced dead, young children may believe that the parents or emergency personnel killed the baby and will kill them if they misbehave or incur their parents’ displeasure in some way.
Efforts should be-and in some areas of the country are being-expanded to help SIDS families. In 1972, the State of Illinois Created The Sudden Infant Death Syndrome study Commission, which is unique in its dedication to helping families. The primary concerns of this commission are to provide information about SIDS and to decrease the trauma experienced by SIDS families. The commission’s activities in offering programs, counseling, and other assistance to SIDS families have served as a model for activities in other states. Some states now have SIDS projects, and all SIDS activities and counseling are available through these projects. In other states SIDS activities and counseling are offered through state public health departments. Also, many parents of SIDS babies are active in self-help groups. Parents and others who have difficulty in obtaining information about SIDS can contact The National Sudden Infant Death Syndrome Foundation, Two Metro Plaza, 8240 Professional Place, Suite 205, Landover, MD 20785 [301-459-3388]; outside Maryland 1-800-221-SIDS] for more information.