Sudden Infant Death Syndrome Treatment & Management

Updated: May 16, 2022
  • Author: Lynn Barkley Burnett, MD, EdD, JD; Chief Editor: Kirsten A Bechtel, MD  more...
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Treatment

Initial Emergency Care After Apparent Life-Threatening Event

Paramedics and other emergency medical services (EMS) personnel should be familiar with the historical factors and observations indicative of an apparent life-threatening event (ALTE). Infants who have experienced an ALTE must be transported to the emergency department (ED); this is true even of infants who appear well when examined by EMS personnel.

For the infant found in cardiorespiratory arrest, the first priority is life support via attention to the ABCs (A irway, B reathing, C irculation) and other medical interventions as appropriate. In the absence of postmortem lividity or other signs of obvious death, infants must be transported to the hospital to ensure full resuscitative attempts.

Observations made by EMS personnel at the scene may assist in the investigation. Such observations should include the following:

  • Location and position of the infant, including the type of surface on which the body lies, the body temperature, the degree of rigor mortis (if present), and any marks and bruises

  • Type of bed or crib used and any defects

  • Amount and position of clothing and bedding materials

  • Presence of toys, pillows, or other objects that may cause asphyxiation

  • Condition of the residence

  • Temperature of the room in which the infant was found

  • Type of ventilation and heating

  • Presence of children or others

  • Reactions of caretakers and others at the scene

In the ED, post-ALTE care includes resuscitation and general stabilization. The patient should be placed on cardiac and respiratory monitoring, including arterial oxygen saturation. The blood glucose level should be determined; hypoglycemia may be associated with apnea, with or without seizure.

The objectives of the workup are to identify “serious” ALTEs and to attempt to establish the cause of the ALTE. ALTE alone is not a definitive diagnosis; a more specific final diagnosis (eg, ALTE secondary to seizure) is preferred. In many instances, however, such specificity cannot be achieved, and the final diagnosis is idiopathic ALTE or ALTE of undetermined etiology. On a cautionary note, the diagnosis of ALTE secondary to reflux is one of exclusion. Ideally, this diagnosis should be made only after a period of observation and reflux monitoring.

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Inpatient Management of Patient With Apnea or Apparent Life-Threatening Event

All infants presenting with nontrivial apnea or ALTEs associated with cyanosis or alterations in mental status or tone should be admitted. Infants who experienced a brief choking episode during feeding or choking associated with a suspected reflux episode can be safely discharged home after a period of observation.

Higher-risk groups include infants who meet the criteria for an ALTE with occurrence during sleep, those in whom cyanosis was observed, those with a history of previous events, and those who required vigorous stimulation or any type of resuscitation.

Stable children may be admitted to the floor with a continuous cardiorespiratory monitor to determine frequency and length of apnea and associated bradydysrhythmias. Infants who required any type of resuscitative measures should be monitored in a pediatric intensive care unit or, if appropriate (according to the severity of the event), in a pediatric step-down unit.

Inpatient evaluation may include the following:

  • Electroencephalography (EEG; seizures may cause or result from apnea)

  • Evaluation for gastroesophageal reflux (GER) or swallowing incoordination

  • Cultures for occult infection

  • Pneumography

  • Polysomnography

  • Arterial blood gas determination

  • Upper airway studies to identify suspected obstruction

  • Electrocardiography (ECG), echocardiography, and other studies to identify congenital heart disease

Transfer is indicated if inpatient facilities are not available to meet the patient’s needs for monitoring and critical care.

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Procedures After Infant Death

Parents’ reactions to a child’s death encompass the spectrum of negative human emotion, from silence to hysteria. They often experience intense guilt, even when there is no reason for such recriminations. On the other hand, many abusive parents are charming and attractive people who can evade and deceive professionals representing multiple disciplines. They may appear to be caring and kind in the presence of professionals, though video surveillance may show them becoming cruel and sadistic within seconds of being alone with a child.

In the setting of a sudden unexpected infant death (SUID), health professionals must be compassionate, empathic, supportive, and nonaccusatory, while simultaneously conducting a thorough investigation of the death. Health professionals experience many of the same emotions as the parents (eg, guilt, anger, sadness, self-reproach, shock). Consideration should be given to critical incident stress debriefing after an infant death (or after any other particularly stressful case).

If the infant is pronounced dead, inform the family in a quiet environment. Refer to the child by name, not as “the baby.” Detailing resuscitative efforts before telling the parents of the death is not helpful and may engender parents’ resentment. Specifically and directly, tell parents that their child has died; use of words such as “dead” or “died” avoids the confusion that may result from gentler terms (eg, “passed on.” Expressions of sorrow and sympathy are appropriate and desirable, but avoid statements such as “I know how you feel.”

Explain to the family the local procedure that is followed after the death, including autopsy and death investigation by local authorities. Follow the protocol of the local medical examiner or coroner’s office concerning retention or removal of an endotracheal tube or lines for vascular access.

In the absence of indications of significant antecedent illness, inconsistencies in the history, or obvious evidence of injuries, inform parents that their child’s demise is an SUID and that classification of the type of SUID can be established only through review of records, thorough scene investigation, and complete postmortem examination. Emphasize that although SIDS is one type of SUID, a final diagnosis of SIDS may be made only by excluding all other causes of death. Reassure the family members that if the final diagnosis is that of SIDS, there was nothing they could have done to prevent the death (although keep in mind steps that may reduce the potential of SIDS in the family’s other children; a very fine line to be navigated). Emphasize to them that intense feelings of grief are normal and that resources are available for support.

It may be appropriate to encourage the parents and family to see and hold the infant if they feel that they are able to do so. However, some coroner or medical examiner offices do not want the infant’s body left alone with the family, and they also do not want family members to hold the infant until a medicolegal death investigator has arrived. Local policy should be followed and, where appropriate, diplomatically explained to the family.

A comprehensive infant death investigation may require the coroner or medical examiner to call on the expertise of emergency physicians, pediatricians, pediatric pathologists, radiologists, pediatric neuropathologists, and other medical specialists, in addition to the medicolegal death investigator and forensic pathologist.

Issues such as baptism, grief counseling, religious support, reactions of surviving siblings, and risk of SIDS in subsequent siblings may have to be addressed. Return clothes or personal belongings to the parents, after receipt of permission from the coroner or medical examiner. In addition, a physical memento may be offered (eg, a lock of the child’s hair or a handprint or footprint).

Refer the family to a local SIDS program (US SIDS program listings are available at Association of SIDS and Infant Mortality Programs). One may wish to attend the viewing or services and send a sympathy card. Listen supportively and allow expressions of grief. Arrange to meet with the family to discuss the results of the autopsy and answer their questions. Discuss grief response to the loss. Over the longer term, remain available to families as needed. Explain that special times of grief include the anniversaries of the infant’s birth and death.

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Prevention

Recommendations regarding the infant’s sleep position and bedtime environment have been with a view to preventing SIDS (see the image below).

Several key recommendations related to infant slee Several key recommendations related to infant sleep position and sleep environment. Sources: American Academy of Pediatrics (AAP), National Institutes of Health and Human Development (NICHD), Consumer Product Safety Commission (CPSC), Association of SIDS and Infant Mortality Programs (ASIP). Adapted from "What is SIDS" monograph published by National Sudden Infant Death Syndrome Resource Center.

Suggested measures for preventing SIDS include the following:

  • Start prenatal care early; schedule frequent well-baby checkups, and ensure that immunizations are current

  • Avoid cigarettes, alcohol, and other drugs while pregnant; in particular, avoid exposing the baby to cigarette smoke

  • If possible, breastfeed the baby

  • Burp the baby during and after feedings, especially before putting the baby to sleep

  • Place the baby on a firm, flat mattress in a safety-approved crib; avoid pillows, blankets, sheepskins, foam pads, or water beds

  • Do not restrain the baby during sleep

  • Consider using a fan in the infant’s room to improve ventilation [116]

Back to sleep for every sleep by every care giver up until age 1 year. [17] The supine sleep position does not increase the risk of choking and aspiration in infants, even those with gastroesophageal reflux, because they have protective airway mechanisms.

Although this position is preferred for most infants, individual medical conditions might warrant that a physician recommend otherwise after weighing the relative risks and benefits. Thus it may be inappropriate for a premature baby with respiratory distress. Likewise, while the general recommendation is that infants with gastroesophageal reflux should be placed for sleep in the supine position for every sleep, there are rare exceptions, such as infants for whom the risk of death from complications of gastroesophageal reflux is greater than the risk of SIDS (ie, those with upper airway disorders, for whom airway protective mechanisms are impaired), including infants with anatomic abnormalities such as type 3 or 4 laryngeal clefts who have not undergone antireflux surgery. [17] Parents of infants with any special problems should discuss the supine sleeping position with the baby’s physician.

Side sleeping is not safe and is not advised. [17]

In Australia, New Zealand, the United Kingdom, and the Netherlands, public campaigns against the prone sleeping position were accompanied by 20-67% reductions in SIDS incidence, [77] without any increase in deaths from aspiration or other disorders resulting from use of the supine sleep position. In the United States, a substantial reduction in the use of the prone sleeping position coincided with a progressive decline in the rate of SIDS.

With reference to prevention of a cardiac cause of SIDS, Towbin and Friedman believe that ECG screening of infants at high risk for SIDS (eg, those with a family history of SIDS or long QT syndrome [LGTS] and those who have had an ALTE) is appropriate and justified. [117]

Studies from overseas centers suggest that pacifier use may reduce the risk of SIDS. [104] These simple items may have a number of positive effects, such as protecting the infant from nasal compression, enlarging the infant’s pharyngeal airway, lowering arousal thresholds, and strengthening the pharyngeal muscles responsible for maintaining the airway. [63]

The pacifier may be offered to the infant when he or she is placed for sleep; however, its use should not be forced if the infant refuses it. Once the infant is asleep, the pacifier need not be reinserted if it falls out. The pacifier should be cleaned and replaced regularly. It should not be sweetened in an effort to induce the infant to take it. For breastfed infants, pacifier introduction should be delayed for at least 1 month after birth to ensure that breastfeeding is well established.

Current evidence suggests that bed-sharing should be avoided. This practice may lead to airway compromise, as a result of suffocation by soft or loose bedding or a sleeping adult, or to overheating. Cosleeping on a couch or sofa is associated with an especially high risk for SIDS and must be avoided. Risks associated with bed sharing are greatly increased when this practice is combined with parental smoking or maternal alcohol consumption or drug use. [118]

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Consultations

Consultations with pediatric subspecialists should be obtained as indicated.

In addition to the medical examiner or coroner, several other key individuals should be contacted immediately after the death, as follows:

  • The infant’s primary health care providers should be notified of the death so that they may provide consolation and immediate guidance to the family; they can also provide the infant’s relevant medical history

  • If subspecialty health care providers cared for the infant, they should also be contacted for the same reasons

  • Immediate and extended family members should be contacted to assist the family with grief support

  • The family’s religious institution and chaplain staff may also be contacted to offer consolation and guidance to the family

  • In special cultural settings, family or tribal elders may be notified to assist the family following the death

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Long-Term Monitoring

A 1986 consensus statement of the National Institutes of Health identified the following 3 types of patients as candidates for home monitoring:

  • Group I - Term infants with unexplained apnea of infancy, usually manifested by an ALTE or an abnormal pneumogram

  • Group II - Preterm infants who continue to demonstrate apnea or bradycardia beyond term (ie, 40 weeks post conception)

  • Group III - Subsequent siblings of 2 or more infants who died of SIDS

Other appropriate candidates include infants with bronchopulmonary dysplasia, particularly if they are oxygen-dependent, and infants requiring tracheostomy for airway support.

Monitoring devices designed for home use typically measure chest wall movement and heart rate. The most important parameter is heart rate; documented death recordings have indicated severe bradycardia before prolonged central apnea. The ability of monitors to detect bradycardia is also of significance in obstructive apnea because such a state does not cause diminished movement of the chest wall.

Death recordings show that home monitoring does not prevent death from SIDS. Parental interviews indicate that even when a home monitor was present, it was unused in at least 50% of cases. One of the reasons for this apparent inattention is that home monitors are subject to false alarms caused by infants’ shallow breathing or normal cardiac decelerations.

Meny et al report that 2 of the 3 SIDS patients they studied had monitor alarm activations to which parents did not respond for 2 hours. [26] In both cases, the lethal occasion had been preceded by a large number of false or meaningless alarms—in 1 case, 60 false alarms in a single day. Such findings suggest that parents with home monitors need training in use of these devices and in recognition of true alarms. They should be taught simple equipment maintenance and should receive instruction in cardiopulmonary resuscitation (CPR) for infants.

The estimated expense of home monitors is in the range of $3000-5000 per infant, with rental and maintenance costs in the range of $150-300. Monitoring is cost-effective in siblings of infants who have died of SIDS, but whether it is so in other infant groups remains to be determined.

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