SIDS: The Anonymous Killer
This article is the cover story in the Fall 1996 edition ofThe Gold Cross, the magazine of the New Jersey State First Aid Council. The article was written by John Zasowski, MS, MICP, a paramedic at Hackensack University Medical Center. This article is written by a first responder for other first responders. As such, this would be useful information to share, if an opportunity exists, with other first responders. The follow-up article,SIDS: A Mother's Story, also appeared in the magazine. Written by Deb Mihalko, this story offers one parent's perspective of how first responders can impact a very tragic situation ... a SIDS death.
Perhaps the most difficult call for an EMT or paramedic is one that involves the death of a child No amount of experience or training can prepare us for the emotional distress of the family, or the personal feelings that afflict us as caregivers.
It is traumatic enough for a parent to lose a child who is terminally ill or critically injured, but it is almost incomprehensible to lose a healthy infant to a condition that strikes without warning and has no obvious cause. The name of this killer is Sudden Infant Death Syndrome, or SIDS.
SIDS infants die in their sleep, often undetected until hours later. The frantic parents call 9-1-1. Upon EMS arrival, it is obvious that there is no hope. It is here that our professionalism and skill count most for our treatment of our forgotten patients the parents, relatives, and friends of the infant.
What is SIDS?
For nearly 3,000 years, the unexplained and sudden death of infants has been recognized. It was once believed that death was caused by suffocation as the infant slept. We now know, however, that suffocation is not the cause of death. The National SIDS Resource Center identifies SIDS as "the sudden death of an infant under one-year of age that remains unexplained after a thorough case investigation, including a complete autopsy, examination of the death scene, and review of the clinical history."
SIDS is the leading cause of death in the United States of infants between the ages of one-month and one-year of age, with the greatest number taking place between two months and four-months of age. The National Center for Health Statistics reported that in 1988 the number of SIDS cases numbered 5,476. Other sources set this number as high as 7,000 per year - nearly one baby every hour of the day. More SIDS deaths are reported in the winter months and there is a 40 to 60% male-to-female ratio.
When & Where Does It Happen?
SIDS strikes at any time, in any place. SIDS has occurred in hospitals where trained personnel could have provided resuscitation if they had been aware of the situation. SIDS has also been reported to occur while the infant was in the arms of its parent or other adult.
The most common case scenarios reported include:
|The infant is put to bed and found dead the next morning or sometime during the night. Again, there are no signs of struggle or distress.|
What Does Not Cause SIDS?
No one knows its exact cause. The diagnosis of SIDS is made by ruling out other causes of infant death from information gathered at the autopsy, the death scene and investigation, and a thorough review of victim and family case history. Although we do not know exactly what SIDS is, we do know what it is not:
|It is not caused by choking, vomiting or minor illness.|
|It is not caused by vaccines or other immunizations.|
|It is not contagious.|
|It is not caused by child abuse or neglect.|
|It does not cause pain and suffering to the infant.|
|It can not be predicted or prevented at this time.|
What Are The Associated Risk Factors?
Risk factors are environmental influences and behavioral characteristics thatmay be associated with a disease process or condition, butare not necessarily the cause of the disease or condition. Researchers have now identified risk factors, both in the mother's and the infant's health, in the mother's behavior during pregnancy, and in the environment that seem to influence the occurrence of SIDS. The irony is that these risk factors are not reliable in predicting when, why, or if SIDS will occur.
The maternal risk factors are:
|cigarette smoking during pregnancy;|
|mother's age less than 20 years;|
|poor prenatal care;|
|low weight gain during pregnancy;|
|use of illegal drugs during pregnancy;|
|history of sexually transmitted disease or urinary tract infection.|
The risk factors involving the infant and the infant's environment are:
|exposure to second-hand smoke;|
|prone position during sleep.|
Research shows that the safest position for a full-term infant to sleep is supine This does not apply to infants with breathing problems, excessive spitting up after eating, and possible preterm infants.
|The use of firm bedding materials is preferred over less firm materials such as waterbeds, sheepskins, or beanbags.|
|Research has shown that breastfed babies were less likely to die of SIDS.|
|Current research has shown that overheating, e.g., too much clothing or a room too warm, may increase the risk of SIDS.|
It is important to note that risk reduction does not guarantee that an infant will not die of SIDS. Likewise, because an infant is in one or more risk categories does not mean that the infant will die of SIDS.
How to Handle a SIDS Emergency
The first priority at the scene of an infant cardiac arrest is the rapid assessment and treatment of the infant. If the decision is made to begin treatment, prehospital care will follow adopted basic and advanced pediatric life support guidelines including:
|Establish a patient airway.|
|Provide ventilations with 100% oxygen.|
|Begin chest compressions.|
This information is not new to EMS providers. In SIDS cases, however, this is just the tip of the iceberg. Handling the scene in this case involves much more than our normal protocols. First you must:
|Determine if treatment and transport are warranted. In many cases, death has occurred hours before the discovery of the infant. Treatment and transport in cases of obvious death may not be warranted. Transport of an obvious dead child does not make the situation easier for the family. The presence of the following conditions indicates that irreversible brain death has occurred:|
|Rigor mortis: the stiffness of the body which accompanies death. Rigor becomes apparent about two hours after death at room temperature.|
|Livor mortis: the color of death caused by the pooling of blood in the dependent parts of the body. It also becomes apparent about two hours after death at room temperature.|
|Algor mortis: the temperature of death. The patient's temperature will begin to drop immediately at death and the body will feel cold at room temperature.|
|If there is any doubt about the viability of the patient,begin CPR! - Always err on the side of the patient. Do not withhold treatment if there is any question in your mind that the patient has a chance of survival.|
|Do not delay transport to the emergency room if advanced life support care is too far away. If you are ready to begin transport and the MICU is still a distance away, meet them en route to the hospital.|
|Observe the scene. Pay particular attention to the scene of the emergency. The final determination that SIDS is the cause of death is based, in part, on evidence at the scene. Because we hasten to resuscitate the infant, on scene evidence can easily be destroyed and valuable information may be quickly lost. Document what you found when you arrived; it may prove invaluable later. If you need to move the patient, or something in the patient's immediate environment, note it.|
|Dealing with high-risk infants: You may be called to the home of an infant who is on an apnea monitor or who has been identified as having an "apparent life-threatening event" (ALTE). These infants include those who have experienced periods of apnea (cessation of breathing), or are at risk of prolonged apnea. While all infants with ALTE are not candidates for SID S, seven percent of SIDS cases did show a history of ALTE. When you arrive at the scene of an incident involving this type of baby, no matter how well the baby may look, transport to the ER is always advised.|
The Forgotten Family
But all too often we forget the other patients in these cases: the parents, family, and friends of the deceased infant. Some in EMS do not realize that when we treat a patient, we treat the whole family. Nowhere is this more essential than in our dealings with SIDS families. In this case, there are several things we need to do and to avoid doing:
|If at all possible, do not separate the parents and the child. It has been a longstanding belief in EMS that an emergency medical situation is too emotionally charged to allow a parent to remain with his/her child, and therefore, the parent should not he a part of the resuscitation effort. This belief is not only not true, but can he emotionally devastating to both the parent and the child. The most frequent complaint SIDS parents have about EMS is that they were not allowed to be with their infant during treatment and transport. Almost unanimously, SIDS parents were aware their baby was dead and that resuscitation was futile. Their wish was to be there for the "final moments" of their child's life, before the official pronouncement of death. With this in mind, if parents wish to he with their child, allow them to do so. Only separate them if the parents are hindering the resuscitation effort.|
|Never make judgments or assumptions about the situation. Because of a general lack of knowledge about SIDS, it is easy to pass judgment on a family or imply that there was child abuse. The findings of death are easily confused with physical signs of abuse, especially if the infant has been dead for hours. You may feel angry at someone you think has caused the infant's death.SIDS is not child abuse! It is not the job of EMS to determine the cause of death. By saying the wrong thing or giving someone an angry look, you devastate innocent parents. Their future is difficult enough without the addition of your accusations of child abuse.|
|Don't say the wrong thing. Dealing with the death of an infant will, no doubt, be the most difficult situation in your EMS career. You will experience emotions like horror, frustration and anger because you couldn't do more. Because of this, you'll find it difficult to find the proper words or actions in dealing with the parents of the dead child.|
|Do not use phrases like "passed away" or "they're gone." 'Dead' is not a dirty word. Use it. Don't try to sugarcoat the event.|
|Do not tell them that everything is all right. It's not.|
|Do not try to find something positive about the infant's death (e.g., "Your baby's in a better place." "The family will grow closer over the loss.")|
|Do not say "J understand how you feel." Unless you, too, have lost a child, you cannot possibly understand what the parents are experiencing. And do not tell them about your sister's uncle's brother whose child or wife or mother died. "Matching grief" is totally inappropriate and unprofessional|
|Do not make any comments about the home environment. SIDS strikes all socioeconomic groups: the rich, the poor and the middle class. And the ethnic background of the infant does not influence who is affected by SIDS. Because some people do not live as others, or are from a different culture, does not mean they caused the death of the child, nor does it mean they did not love their child.|
|Do not suggest that the care the infant was given at home, in the field, or in the ER, was less than adequate. This will add to the parents' feelings of guilt that have already begun.|
Say And Do The Right Thing.
|Show your concern and sympathy when talking to the family. Kindness and caring go a long way at this time. Let them know that you are there to help in any way possible, and that they have your deepest sympathy. Be prepared for a variety of emotions including anger. This is not directed toward you, but is a natural emotion directed at the situation. Don't get offended and make matters worse.|
|Allow the parents to stay with the child and hold him/her if they wish. They understand that their child is dead. Allow them to say goodbye in their own way. It is not helpful to immediately remove the child from the site of the home, as once believed. This upsets the natural grieving process.|
|Recognize the need for counseling. Whether or not the infant is transported to the hospital, the family needs grief counseling. While the ER staff usually arranges for this when the patient arrives at the ER, it may be up to you to arrange for mobile crisis or to contact a SIDS help hot line. Never leave a grieving family alone without emotional support after the death of a child.|
|Be respectful of the scene. Do not make a lot of noise; keep your voices down. Clean up any mess you might have made; don't leave used rubber gloves or equipment at the scene.|
Resolve Your Feelings
When the call is over, think about how you feel. If you or any member of your crew are having difficulty dealing with the situation, get help. Critical incident stress debriefing may be warranted. Remember: You may have to face similar situations in the future. If you don't resolve your feelings you may become ineffective in treating critically ill children, or shy away from providing emotional support to a distraught family.
Unfortunately, at this time, there is no screening for SIDS which might predict its future occurrence. There are no corrective treatments nor is there any explanation of its cause. Our hope lies in further research which is steadily ongoing with new information developing every day. Several theories about SIDS and possible treatments are currently under investigation. Programs for the relatives of SIDS help families cope with the death of a child and are available nationwide. These programs are the key to the emotional survival of SIDS families. Organizations such as the SIDS Network make research, counseling, and education possible.
We must remember that at the scene of a SIDS death we are responsible not only for the treatment of the child, but as important, the treatment of the family. It is here that our professionalism and compassion are the most effective tools we possess. The way in which we care for the family is the first step to their recovery in dealing with this devastating and tragic loss.
Author's note: I would like to thank the SIDS Network for their help in the preparation of this article.
John Zasowski, MS, MICP, is a paramedic at Hackensack University Medical Center.
SIDS: A Mother's Story
On September 15,1989 all my dreams became reality with the birth of my daughter, Margaret Joy. Our little girl had finally arrived after a very difficult pregnancy and delivery. Meg was a very content and happy baby. Her brothers Jay, ten, and Jon, five, loved their new roles as big brothers. They played with their new sister, and even took turns changing her diapers. Life in our household seemed charmed.
About a month later, I nursed Meg around midnight and put her in the same crib that both her brothers had slept in. At 6:30 a.m., I woke as I heard my husband Chuck getting ready to go to work. I became concerned when I realized that Meg had slept through her usual 2 a.m. feeding. My husband, certain that his little girl had just slept through the night for the first time, went to get our baby.
Chuck suddenly yelled: "Quick! Call 9-1-1! She's not breathing!" He then began CPR.
I dialed the numbers 911. I heard myself say: "My baby is not breathing." The local EMS unit responded within minutes and the paramedics were close behind. A paramedic grabbed Meg and ran with her to the ambulance. I was relieved: everything that could be done was being done.
A neighbor drove Chuck to the hospital. I couldn't leave as our sons were still asleep. I was thankful that a few of the responders had remained behind to assist me in any way possible. One woman asked if there was anything she could do to help. I asked her to put her arms around me and hold me. She cried with me. Her embrace gave me the strength to continue what I had to do. I will always remember her kindness.
I made arrangements for a friend to care for my boys and I began the longest, saddest journey of my life. When I arrived at the emergency room, it seemed unusually quiet. Across the room I saw a young doctor. To me he appeared very small, maybe because he was diminished with his own grief. He had tears in his eyes as he struggled to find the words to tell me what happened. In my heart I knew our precious Meg was dead. "You don't have to tell me," I said. "I already know. Please take me to her."
On a very large table lay my sweet little girl. She seemed so small, so lost and all alone in that cold, silent place. I picked her up and sang to her. With all my heart I wished for her to cry out or draw a breath, all the time knowing that I would never again share in what so many parents take for granted.
Months later we received a request from our local EMS group to share our experience, and more important, meet with those who had responded to our call. We were deeply honored by the request since we wanted to personally thank everyone who had fought for the life of our precious little girl. The meeting gave us the opportunity to embrace and cry with those whose lives had touched ours at a time when we needed them most. They had handled the situation in a non-judgmental, loving manner which set the tone for our recovery. Their support set us on a positive road to reaching the grief destination of "resolution" finding a way to incorporate the event in life and moving on. This does not mean forgetting but remembering with love.
I have told Meg's story hundreds of times in many different settings, but this is the first time I have put it into words on paper. I was unprepared for the emotional impact this process would have, even seven years later. Since you allowed me to share Meg's story, you too hold a special piece of her in your heart. You will carry her with you if you are ever called upon to respond to an infant death.
If there is such a thing as a positive scenario to such a tragedy, my family had one. The emergency personnel who responded to our call were kind and caring. They strived to attend to the needs of the entire family, and we are grateful to each and every one. This gratitude extends to all emergency responders who dedicate themselves to serving others in their time of greatest need. From the bottom, of my heart and the depth of my soul, thank you for all you do, and all the lives you have touched.
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