>Identify children who may be at risk for sudden infant death syndrome (SIDS).
>Review and differentiate between an apparent life-threatening event (ALTE) and Sudden Infant Death Syndrome.
>Describe the role of EMS in treating children with an ALTE or a SIDS event and how to handle the parents of these children.
Apnea: A period of time when breathing stops.
Apparent life-threatening event (ALTE): A sudden event often characterized by apnea or other abrupt changes in behavior, such as change in color, muscle tone, coughing or gagging.
Lividity: A sign of death where there_s settling of the blood in the lower (dependent) portion of the body, causing a purplish-red discoloration of the skin.
Munchausen by proxy syndrome (MBPS): A psychological disorder in which a parent either fabricates an illness or induces an illness in their child. Also called ˙factitious disorder by proxy.Ó
Neurotransmitter: A chemical substance that transmits nerve impulses across a synapse (i.e., gap between neurons).
Rigor mortis: The rigidity of the body after death.
If you’ve been in EMS long enough, you’ve had to respond to a call involving sudden infant death syndrome (SIDS). It’s a sad and frustrating condition that forever changes families. One of my wife’s sisters lost her child to SIDS well over 20 years ago and still grieves.
What is SIDS? What causes SIDS? What role does EMS play in SIDS? These are all tough questions — but they’re worthy of discussion.
SIDS is certainly an enigma. How do seemingly healthy babies simply die in their sleep? When I was in medical school in the early 1980s, we were taught several theories about SIDS. One theory was that the baby had a hypermobile mandible that obstructed the airway during sound sleep.
Another theory was that the respiratory center in the medulla was immature and would periodically quit firing (leading to central apnea). In fact, there was a period of time when we used aminophylline to try and prevent SIDS. Aminophyline produces several effectsƒone of which appears to be stimulation of the respiratory centers in the brain. Later, it was believed that SIDS was a form of sleep apnea and could be prevented with body positioning alone.
These theories have all been subsequently disproven to one degree or another. Since that time, other theories on SIDS have evolvedƒand some are standing up to the test of science.
SIDS is the third-leading cause of infant deaths in the U.S., averaging more than 4,600 deaths a year.(1) Further, SIDS is the most common cause of sudden, unexpected death among infants between one month and one year of age.
Statistics show that 90% of SIDS deaths occur in infants under six months of age, with the majority between two and four months of age.(2) There’s no way to prevent SIDS, nor can it be predicted. There’s probably no one single cause of SIDS.
CAUSES OF SIDS
Most likely, a combination of three factors, termed the ˙triple-riskÓ model, is responsible for SIDS: biological vulnerability, environmental stressors and a critical development period.(3) Although these risks can be minimized, there’s no assurance that doing so will prevent SIDS.
The use of a home apnea monitor (pulse and respiratory rate), often touted as a sentinel for SIDS, is„not associated with decreased mortality. On the other hand, many have suggested the administration of childhood vaccines may be responsible for SIDS; however, no correlation between vaccinations and SIDS has been found.(17)
These factors can be classified into the “triple-risk” model as follows:
>Male gender: Boys are more likely to die of SIDS than girls.
>Black or Native-American ethnicity: For reasons not totally understood, SIDS is more common in„babies of African American and Native American descent. Some studies speculate that child-care practices may play a role in this.
>Heart and/or brain abnormalities: Some heart and brain abnormalities may put infants at risk for SIDS. For example, in one study, 12 of 24 infants who died from SIDS had a genetic defect in one of the genes associated with a prolonged QT interval on the ECG.(4) Other studies have noted that brainstem problems, particularly related to the„neurotransmitter serotonin, result in immature autonomic cardiorespiratory control and failure of the brainstem to promote arousal from sleep following apnea.(5)
>Genetic predisposition: There’s a study under way to determine the role of genetics in SIDS. Although there has been a link with prolonged QT syndrome, other genetic links are being investigated, such as how the child responds to infection and stress.
>A mother who smokes or uses drugs during pregnancy: Maternal drug use during pregnancy has been linked to SIDS. One New Zealand study noted an association between maternal caffeine use and SIDS.
>Secondhand smoke: There’s a link between nicotine exposure through secondhand smoke and SIDS.
>Winter, cold weather birth months: SIDS is more common in winter months and has been attributed to cold temperatures.
>Facedown placement for sleep: Babies who sleep facedown are much more likely to die of SIDS than babies who sleep on their backs. Babies at greatest risk are those who regularly sleep on their backs and are suddenly switched to stomach sleeping.
Critical development period:
>First six months of life: During this period, several developmental milestones occur, and infants appear much more vulnerable to SIDS (hence the increased incidence of death between ages two and four months).
>Intrauterine development: Exposure to drugs and other chemicals during pregnancy, especially in the first trimester, has been associated with an increased incidence of SIDS. In one study, poverty was associated with SIDS and malnutrition was suggested as a cause.(7)
THE ALTE/SIDS CONTINUUM
Like any disease process, there’s a continuum to SIDS. Only in recent years have we come to identify the earlier components of the SIDS disease process. Although there’s still debate in this arena, many have begun to associate anapparent life-threatening event (ALTE) with SIDS.
An ALTE, formerly referred to as ˙near-miss SIDS,Ó is defined as a sudden event often characterized by apnea or other abrupt changes in the child’s appearance or behavior.(8) Symptoms of an ALTE include apnea, change in skin color or muscle tone, coughing or gagging.(9)
The incidence of ALTEs is unknown but estimated at 0.05 to 6%. It occurs in children less than a year old, with a peak incidence between two weeks and two months of age and most events occurring at less than 10 months of age.(10) It’s postulated that ALTEs that occur during the day are detected and remedied, but when they occur at night, they aren’t remedied, and SIDS results.(11)
When ALTEs continue to occur, despite a negative clinical work-up, Munchausen by proxy syndrome (MBPS) must be considered. MBPS is a psychological disorder whereby a parent, usually the mother, intentionally injures their child in order to receive attention.
RESPONDING TO ALTE & SIDS CALLS
EMS personnel play three major roles in a suspected SIDS case: providing needed medical care, if any; observing, assessing and documenting the scene; and offering support and consolation for the family. When responding to an ALTE or SIDS call, you must first determine whether you’re dealing with a case of ALTE or SIDS.
The differentiation is straightforward: The SIDS patient will be dead, and the ALTE patient won’t be. This is a brutal statement, but it’s supported by the scientific evidence. In a study of EMS calls related to SIDS deaths in Orange and Los Angeles counties, Calif., researchers found there were 113 cases of SIDS, and they had adequate data for 110 of these cases. They found the survival rate for SIDS was 0%. Although 5% of infants had a return of spontaneous circulation (ROSC), none ultimately survived. The arrest rhythms found were asystole (87%), pulseless electrical activity (8%) and ventricular fibrillation (4%).
Because SIDS patients have a 0% chance of survival, the authors suggested that lights and siren response shouldn’t be used for SIDS calls and resuscitation should be terminated on scene, if attempted.(12) However, unless significant efforts are undertaken to educate your community about the poor prognosis of SIDS, it’s probably not prudent to abandon lights and siren responses despite the futility of the process.
With ALTEs, children should be aggressively treated and transported. Specific care should be directed at the condition encountered and should include monitoring, oxygen, and respiratory and cardiac support. With SIDS, a decision must be made whether to attempt resuscitation.
If there are obvious signs of death (e.g. lividity, rigor mortis), then resuscitation shouldn’t be started. If the presenting rhythm is asystole or pulseless electronic activity (PEA), then resuscitation probably shouldn’t be started because it will invariably be futile.
If ventricular fibrillation is encountered, this points to a possible cardiac cause and probably should be treated more aggressively. Regardless, EMS personnel should have a low threshold for terminating resuscitation in the field. Remember, always follow your local protocols in regard to SIDS and field termination.
SCENE ASSESSMENT & PROTECTION
EMS personnel are usually the first responders on scene of a SIDS death. Because of this likelihood, it’s extremely important to note the scene and document your findings. You want to ask questions about the event and the baby. Open-ended questions generally provide more information and are recommended.
These should include:
>Can you tell me what happened?
>Where was the baby?
>Who found the baby?
>What did you do when you found the baby?
>Has the baby been moved?
>When was the last time the baby was seen alive?
>How did the baby seem today?
>Has the baby been ill recently?
SIDS is often an innocent event, but always consider the possibility of something sinister.„Table 1„details some of the findings of SIDS linked to child abuse and neglect.
Table 1: Physical Findings Related to SIDS & Child Abuse
>No external signs of injury
>Lividity (settling of blood, frothy drainage from the nose/mouth)
>Small marks (e.g., diaper rash) look more severe
>Cooling/rigor mortis (occurs quickly in infants, ~ 3 hours)
>Purple, mottled markings on head and face area (may mimic bruises)
>Appears to be a well-developed baby
When all of the above are present PLUS parents say that the infant was well when put to bed (last time seen alive)ƒyou may initially suspect SIDS.
>Distinguishable and visible signs of injury
„„ >Broken bone(s)
„„ >Bruises, cuts, wounds, welts
„„ >Head trauma (e.g., black eye)
>May be obviously malnourished
>Other siblings may show pattern of injuries commonly seen in child abuse/neglect.
When all of the above appear accurate and account for all injuries on the infantƒyou may initially suspect child abuse.
THE FAMILY & THE SIDS DEATH
The death of a child is one of the most devastating events that can happen to a family. After a SIDS death has been detected, the parents and family essentially become the patient. People react to the shock of death in different ways. It’s important to recognize this and remain calm. They may repeat the same question as they try to understand the horrible incident that has happened to them.
Some families may insist that resuscitation be attempted, while others understand that such measures are hopeless. Some may simply want to hold the baby. You’ll sometimes need to walk a fine line between meeting the family’s request and protecting the scene for law enforcement and the medical examiner or coroner personnel.
If possible, the family needs to understand that SIDS deaths occur and there’s no way to either predict these deaths or prevent them. Further, they need to understand that the baby is beyond medical care and attempting resuscitation measures won’t bring back their child.
Help the parents contact their personal support system. These may be friends, family or a religious leader. Make sure they’re comfortable physically. Keep them informed of what’s occurringƒespecially if there are delays. Some will want to pray. Some want to be left alone. Some will get angry. Some will even get angry with you. Expect this, but understand they’re not really angry at youƒbut at the situation.
EMS PERSONNEL & THE SIDS DEATH
EMS personnel will undoubtedly have various feelings about the SIDS death. Part of our spirit and culture is to try and protect children from harm, and we immediately feel guiltyƒalthough we absolutely did nothing wrong. There will be sadness as the family attempts to understand and cope with their loss. We hate to lose patients and often take the death personally. But, remember survival rate from SIDS is abysmal. Any resuscitation measures will serve no purpose.
Child deaths are among the more stressful events we encounter in EMS. The trend in the past was to use Critical Incident Stress Management (CISM) or grief counseling. The prevailing scientific evidence shows that CISM does not mitigate stress and, in some cases, can make it worse.(13)
Likewise, and for similar reasons, common grief counseling has been shown to be ineffective or even harmful for those EMS experiencing normal grief reactions. Talk with your partner, your co-workers and your family. Engage and use your personal support system.(14)
We’re still learning about ALTE, and a great deal remains to be understood. Some low-level evidence indicates home monitoring may be beneficial in detecting an ALTE and intervening. Although many feel there’s a link between ALTE and SIDS, most cases of SIDS occur without any documented history of an ALTE.
Babies should be placed to sleep on their backs. The incidence of SIDS is declining. Most mothers are being taught to place their babies on their backs when put to bed. This is especially important in babies who routinely sleep on their backs. Placing them on their stomachs seems to increase the chances of SIDS.
Eliminate environmental stressors. Smoking shouldn’t be allowed in the house. Ideally, nobody who smokes should handle the baby. The room where the baby sleeps should be kept at a temperature that’s comfortable for the motherƒnot overly warm.
Avoid fluffy bedding and toys. Bedding has been identified as a possible risk factor for SIDS. Parents should be encouraged to use a firm mattress for the baby and to avoid placing the baby on thick, fluffy padding, such as lambskin or a thick quilt. These may interfere with breathing if the baby’s face presses against them. For the same reason, fluffy toys or stuffed animals shouldn’t be left in the crib.
To keep the baby warm, encourage parents to use a sleep sack or other sleep clothing that doesn’t require additional covers. If a blanket is used, it should be lightweight. Tell the parents to tuck the blanket securely at the foot of the crib, with just enough length to cover the baby’s shoulders. The baby should then be placed in the crib, near the foot, covered loosely with the blanket.
Babies should sleep in a crib or bassinet and not the parents’ bed. Babies can suffocate in an adult bed. They can slip below the headboard or become entangled in the covers. In addition, a sleeping parent can accidentally roll over and suffocate them without waking.
Keep the baby close by. Keeping the baby in the same room as the mother, but in a different bed, lessens the risk of SIDS.
Use a pacifier. For reasons that are still unclear, pacifier use decreases the risks for SIDS.(15) It may be that the pacifier displaces the jaw anteriorly, thus improving the airway.(16)
If you’re in EMS for long enough, you’ll eventually respond to a SIDS call. It’s a sad situation. However, it’s important for EMS personnel to understand that SIDS is exactly thatƒa death syndrome. Nothing we do or say will change that.
SIDS is indeed an enigma. We can’t predict its occurrence. We can’t save those who suffer it. But we can help educate the public about the factors identified that seem to mitigate the risks of SIDS.
Most important, EMS providers must avoid feelings of guilt for not ˙doing moreÓ or ˙resuscitating the baby.Ó Such things are impossible, given what we know. Next time you have to deal with a SIDS case, convert that sadness and anger into a passion to educate parents about SIDS and the other causes of childhood death and disability. Education will save many more patients than any cure we could hope to offer.
Test your comprehension with this post-article quiz. Answers are provided at the end.
1.When making a call to a scene of an apparent SIDS death, an appropriate question to ask the parents would be:
a.Does the baby have over-active siblings?
b.When was the last time the baby was seen alive?
c.Do you suspect your spouse may be intentionally hurting the baby?
d.Has the baby been eating on a regular basis?
2.The critical development period that makes children more vulnerable to SIDS is:
a.the first six months of life
b.the child’s second winter
d.both a and c
3.When a family has experienced a SIDS death, EMS personnel can support them by:
a.organizing a Critical Incident Stress Management debriefing session
b.helping the parents contact their personal support system
c.explaining the difference between ALTE and SIDS
d.allowing them to take the baby to the funeral home themselves
4.You make a call to a home where you find a mother holding an approximately two-month-old live baby in her arms. Present history reveals that the baby was found in his crib about 10 minutes ago not breathing. The child has no past medical history. You determine that this patient is having an ALTE because on exam you find:
b.asystole on the ECG
d.warm, pale skin
5.Which of the following is part of the ˙triple-riskÓ model possibly responsible for SIDS:
a.advanced brain development
b.daytime sleeping immediately after eating
c.environmental stressors, such as secondhand smoke
d.over-stimulation by neurotransmitters
6.When making a call on a pulseless, apneic baby, EMS personnel should be alert for:
a.number of adults and children in the house
b.parents’ socio-economic status
c.signs of injury, such as bruising
d.the condition of the home
7.EMS personnel can positively affect the outcome of SIDS-related deaths by:
a.educating the public about the risk factors for SIDS
b.performing ventilations without compressions on pulseless babies
c.beginning resuscitation efforts on all babies regardless of obvious signs of death
d.ensuring that dispatch is educated in the triple-risk SIDS model
8.You make an early morning call to a residence where a hysterical mother is screaming about her lifeless baby. The approximately four-month-old baby is cold and rigid. The mother is angry and hitting you when you tell her the baby is dead and you can’t do anything about it. Your appropriate response is to:
a.call the police to control the mother
b.attempt to resuscitate the rigid baby
c.reassure and comfort the mother as best as you or your partner can
d.explain that putting the baby to sleep on her stomach is the likely problem
9.An apparent life-threatening event (ALTE) is one where:
a.the infant choked on finger foods, such as cheerios, during mealtime
b.there was a witnessed apneic period for the infant
c.the mother has transmitted a psychiatric disorder to the infant
d.both parents smoke cigarettes, resulting in infantile asthma
10.SIDS can’t be prevented, but parents can be educated in mitigation measures, such as:
a.having the baby sleep with them in their bed
b.placing the baby on his stomach to sleep
c.avoiding the use of a pacifier
d.using sleep clothing that doesn’t require additional covers
1. b, 2. d, 3. b, 4. d, 5. c, 6. c, 7. a, 8. c, 9. b, 10. d
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This clinical review feature article is presented in conjunction with the Department of Emergency Medicine Education at the University of Texas Southwestern Medical Center, Dallas.