Generally, SIDS victims present in one of two ways: not amenable to resuscitation or potentially responsive to resuscitation measures. Infants with rigor mortis, livedo reticularis, pH <6, and a significantly reduced core temperature in the absence of a history of environmental hypothermia should not be resuscitated. On the other hand, the warm infant with apnea and no pulse may benefit from attempts at resuscitation. Regardless of the presentation of SIDS, obtain a thorough history and perform a complete physical examination. Important questions include complete description of the circumstances, caretakers, recent illness, prenatal and birth history, maternal and family history of miscarriages or other infant deaths, and family history of metabolic disease. For epidemiological information, documentation of sleep position, sleep location, when and by whom the infant was last seen alive, when and in what position the infant was found, and whether or not bed sharing was involved is helpful to the coroner. Examination of the infant may be unrevealing or may show subtle though relevant signs of trauma, such as facial bruising, petechiae, blood in the nose or the mouth, or a torn frenulum that raise suspicion of inflicted trauma. Rectal temperature and presence of rigor mortis or lividity will help the coroner in determining an approximate time of death.
The management of a nonresuscitative SIDS infant and interactions with the infant's family are emotionally challenging for many providers. One major responsibility of the physician is to notify, counsel, and educate the family. Frequently, the family wants to spend time with the deceased infant. In general, the infant's body should not be manipulated or photographed after death has been declared unless permission is granted by the coroner. If the family wants a hand or footprint, inkless pads must be used, and this must be documented in the medical record. Do not remove any lines or tubes placed during attempted resuscitation. If the presence of tubing is disconcerting to the family, tubes may be cut at the skin to appear less obvious. Unless directed otherwise by the coroner, the family can hold the deceased infant in a private setting but one that allows discrete monitoring of the family.
In most jurisdictions, victims of sudden and unexplained deaths must be reported as soon as possible to the coroner's office. Treating physicians should complete a form reporting the death, but do not sign the official death certificate, as the cause of death will not be evident until the coroner's investigation is finished. SIDS is technically a postmortem diagnosis, and sudden unexpected infant death is a more appropriate term for an ED record (although not included in ICD-10). If blood samples were drawn, put the samples on hold in the laboratory for later access by the coroner. Once death has been pronounced, the physician does not have jurisdiction to perform postmortem sampling or radiography unless directed to do so by the coroner.
Cardiac dysfunction related to prolonged QT interval or Wolff-Parkinson-White syndrome has been reported in SUID,33 with an accessory atrioventricular pathway found in 20% of “SIDS” on autopsy. Up to 35% have an abnormal result on postmortem cardiac channel testing.34 If a cardiac anomaly, particularly a channelopathy is found, testing of family members may be lifesaving, and this is one concrete example to offer families to underscore the importance of an autopsy.
A home scene investigation is often conducted. Some jurisdictions have infant death teams that fully evaluate the circumstances surrounding the unexpected death of young infants. If the physician believes the infant is a victim of SIDS, the family should be so advised but told that the final confirmation awaits the autopsy report. Involving the primary care provider, who may follow up on the autopsy and remain in contact with the family, is of paramount importance. The hospital chaplain or social worker may provide additional support, and a chaplain consult may be especially needed in cases in which the laws regarding autopsy before burial are at odds with the family's religious doctrine. For infants requiring a perimortem baptism, this is ideally done by a chaplain but can be performed by a medical provider if no chaplain is available. Some states also require notification of organ procurement agencies.
When interviewed, one of the recurring themes voiced by mothers of SIDS victims is a sense of self-blame.35 Eliminating interactions that exacerbate this sentiment, while preserving the need for a thorough investigation, is an important tenant in SIDS care. Most communities have organizations for parents of SIDS victims, and information about these organizations can be obtained from First Candle (1-800-221-SIDS, www.firstcandle.org). Parents also may be referred to Web sites such as http://www.sidsfamilies.com.