IMPACT:

Understand grief and grief response
Dealing with grief
What happens with grief
Initial reaction to death
Unable to come to grip with what has happened.
Denial: refusal to believe
Afraid of what has happened and what will happen.
Maximum stress

RECOIL:

2nd stage
Anger, protest, bitterness, guilt feelings
If I, could I, would I. loneliness
How will I go on?
Assist survivor with a need to go on
They will have a yearning for deceased not to be dead
You cannot recover from grief until you are in a past tense process: called closure
He was; instead of he is
Could be preoccupation of the person calling the deceased
Searching for deceased will happen
Desire to be with others, relatives, friends, neighbors
How we react is how the survivor will react!
Be positive, in a negative response
Sift from present tense to past tense

RECOVERY:

I have to go on!
I now must develop a new set of functioning rolls
Realize that life will go on
Set up new social life
Be both father & mother
Facing issues that I am going to be alone the rest of my life
Will need: counseling, financial, and religious
Anxiety; fatigue; stress
Pulling together the past, present, and future
No more denial is evident

DEATH:

End of life but do not sever the bond
Love still exists
What did he or she mean to you
Emotions are the same between long time relationships and short term relationships

LOSS:

Takes you beyond yourself
Loss hurts
We always want to say: I know how you feel
If you don't know, don't say you know, But we do know pain and pain hurts
We don't know feelings
You're never ready for what you will feel
Emptiness and loneliness do not come into focus until it happens
The Loss in death is permanent
Loss invokes feeling of fear and fright
The relationship is gone, it is over

GRIEF/MOURNING:

Grief is the pain of loss, it's over whelming
It can not be contained
It can tear us apart
Anger, disbelieving
Grief is the single most powerful emotion we will ever face

There is a reason why kids have little animals like hamsters, they do not have a long life expectancy; this helps them work through death

Grief shared is grief relief
Bottled up grief causes ulcers
Crying helps to mend
Grief: is the inability to accept what is inevitable
We all will die
Grief is the inability to accept it
Mourning is a process of healing
Everyone who dies has a relationship with someone that effect someone
Mourning: last until you get your sense back about yourself
It is the process to soothe pain
It can not be rushed
Healing takes time
Us who make death notifications will be effected

THE PSYCHOLOGICAL AUTOPSY (What do we do with it? Where do we file it?)

All deaths fit into one of four categories:

N. Natural
A. Accidental
S. Suicide
H. Homicide.

Imputed Lethality: How much of a role did the deceased help in his own death?

High Lethality: He planned it.

Moderate Lethality: He was in a position to die. (Motorcycle going to fast, jumping on a train, driving a car too fast without seat belts, careless and risky.)

Low Lethality: Forgot safety factors A mistake, stupid, caused His own death.

Absent Lethality: Person really wanted to live.
Failure on inside that caused his death.
Failure on the outside that caused his death.

To lethality: Add Age, Sex, family Status.

Example:  79 year old smoker, kids live across town. Natural death.
Coroners case. 911 verses 11 year old girl. Assaulted and murdered 911.
We have different feelings for the girl than we did for the old man.

Example:  21 year old man/boy Motorcycle 130 mph, crash into car, 911
This we deal with differently.
We pigeon hole death notifications.
Psychological autopsy: we file it.
19 year old girl takes pills, suicide, loss of boy friend.
High Lethality

33 year old female or 18 month baby, both are dead, you go to their home - who is that 33 year old girl or who is that baby?
Transference makes it mine.
Cynical slide: We must have a support system so that we can defuse.
Debrief, or else transference takes place..
What if someone was to tell your parents that you were dead?
Be prepared - altruistic response says that I can do it better.
The hedge between altruism and cynicism is debriefing.
Catharsis: A mental and verbal purging. emotional purging. It takes talking to get through a death notification.

IMPACT ON SURVIVORS:

Is anyone ready? Never!

A.C.I.S.: Acute Critical Incident Stress leads to Post Traumatic Stress Disorder, if not adequately handled.

How was notification handled?
What kind of support system is in place?
What information is available?

Even knowing the risk and the hazards does not help prepare for the handling of the loss of a loved one.

Our Reactions: How we feel, think, and act, can help or hinder there reactions!

MOST COMMON REACTIONS:

All Reactions will be either COGNITIVE, EMOTIONAL, OR PHYSICAL
Concentration: decision making problems
Confusion
Hostile
Feeling alone: uncomfortable in social places
Flash backs: intrusive thoughts
Fearing familiar things
How will I Survive?
Numbness: a lack of interest to go on
Guilty: I wish I had...
No one understands
Lowered energy: causing a slow down
Irritated, annoyed
Tense, keyed-up
Easily hurt
Over Imagining
Closure: understanding something is real is when reality settles in
Mind racing: keep repeating and thinking that same thought
Emotionally empty: going through the motions
Anger
Wishing others would take care of you
Sleeplessness
Feeling taking advantage of
Vulnerable
Over thinking decisions
Transference: anniversaries, birthdays, holidays
Angry for not accomplishing more: Why didn't I do...
Displacement

3 RULES TO LIVE BY:

1. If you can't improve on silence, don't!
2. If you can't improve the conditions in your home when you get there, then don't go in
3. We need to use soft words in our vocabulary: splendid, lovely, wonderful, beautiful

DURATION OF DISTRESS:

Will be related to the survivors need for contact. Wife, Mom, Dad, Husband, Sister, Brother
Time is not the healer, although it helps
We have to encourage pre-event behavior
Assist the survivor in doing the things they did before the death

SUPPORT POLICIES DESIRED:

Action Oriented Assistance.
Need to know means: Help me do what is next
Psychological and emotional support assistance
Conformation Information
Command Level Contact: very important
Pastor, mortuary, etc.

1. Take time to accept death, we can't deny it.

2. Take time to let go: Letting go indicates that we are not in control of life.

3. Take time to make decisions.

4. Take time to share:
        Loss of parents, grieve for our past.
        Loss of spouse, grieve for our present.
        Loss of a child, grieve for our future.

5. Take time to believe: There is a difference between fact and faith. Faith works because it is totally illogical. It is 28 to nothing in the last of the fourth quarter. Faith can win. Facts would say it is impossible to win.

6. Take time to FORGIVE: Non-forgiveness is a bitterness. It traps people in their past. Forgiveness is not pardon but it helps in looking at things differently.

7. Take time to feel good about your self.

8. Take time to laugh: laughter in humor is medicine. A merry heart makes like a medicine.

9. Take time to meet new friends.

10. Take time to give: time, energy, effort. Getting involved makes life go on.

DEATH NOTIFICATIONS: IN PERSON ONLY
DEATH NOTIFICATIONS: IN PERSON ONLY
(Suggestions/Recommendations)

Back to Chapter Six Topic Index

The initial reaction to death is that of the Impact stage. This phase is characterized by numbed, stunned and shocked feelings. The person is unable to come to grips with what has happened; he feels suspended form life. Usually the bereaved experience a restricted field of attention and are indifferent to their immediate needs. Often there is denial and a refusal to believe that the deceased is gone. Generally the person is not in touch with his own emotions although he may appear afraid. There is often somatic distress such as choking, shortness of breath, sighing, weakness and poor digestion.

The impact stage is the one where maximum stress is experienced. The time orientation of the bereaves is the immediate present. He is temporarily cut off from both his past and his future and can only deal with the present. This stage varies in length from a few hours to a month or even 6 months or more.

2. Recoil

When the initial shock and numbness of the impact phase begins to lift, the person experiences the first awareness of what has happened. Now the loss is felt most acutely and the bereaved feels restless, tense, and in turmoil. Now the first overt expression of emotion occurs. Anger, protest, restless irritability, irrational feelings, sometimes bitterness both toward others and at one's self, and guilt are feelings that are experienced. There is usually also a need to talk and ventilate. During this stage there will be acute periods of loneliness and often times a childlike attitude of dependency, wanting to be cared for and looked after. This is the time when there is an intense yearning and urge to recover the deceased. This manifests itself in many ways: preoccupation with thoughts of the deceased, a clear visual memory of the deceased, a sense of the presence of the deceased, calling and crying for the lost person, and even a conscious recognition of this urge to search for the deceased by going to his/her grave or places where he/she had been. Usually during this phase the bereaved will need to be with others and to have a stable, supporting environment. However, the initiative will usually have to be on the part of others. It is very easy to remain at this stage, to become fixated here, Furthermore this is a very crucial period and the response of other persons is of critical significance for the bereaved person's future.

The time orientation of the bereaved has now shifted to the past or immediate past. The length of this stage varies for one month to a year or longer.

3. Recovery

3.  GRIEF INTERVENTIONS AND DEATH NOTIFICATIONS

GENERAL ELEMENTS OF EFFECTIVE GRIEF INTERVENTION

Importance of grief work
Ministry of presence
Variety of reactions

SPECIFIC ELEMENTS OF EFFECTIVE GRIEF INTERVENTION

Police officers are constantly being taught street survival, and most of us shudder at the behavior of an unthinking officer who fails to protect himself. There is the ongoing discussion of how large a weapon should be carried and how many spare bullets should be at the officer's immediate disposal. All this is important, but no less important is that the dead will kill you too. it just takes the dead a bit longer to do the job. The living will shoot you, knife you, club you, or run over you. The dead will blow your mind apart and vandalize your emotions until you become a shell of a human being. These are the trappings of death.

Ask any officer to describe the first death scene he worked and he will remember almost every detail. He can recall the position of the body, facial expression, open or closed eyes, location of wounds, and type of clothing worn. No matter how many years ago, he'll still remember. of all the things we forget, it never seems to be a death scene. That being the case, it only stands to reason that an accumulation of such sights eventually takes its toll on an officer, unless he safeguards himself.

There is a social norm among many police officers which says, "Thou shalt have no  unexplained reactions to the things which thou hast seen" So, they spend a bulk of their lives trying to convince themselves and others that they are totally unaffected by dealing with the dead.

Lectures on the subject can help, but they don't eliminate the impact of direct, prolonged experience; that can be a killer. I remember an old man who used to stroll the streets of my hometown with a sad face, bland personality, and a walk that resembled a funeral march. I never knew his name, but my mother always referred to him as "that old man who's dead and doesn't know it." The dead may not physically kill you but they can sap your emotional resourcefulness until you are about as useful as they.

How you receive death will make a considerable difference in the effect a corpse will have on you:

Those who equate human and animal death will likely become cynical, and persuade themselves that no scene is too bloody for them to view and remain unaffected. This illusion is generally exposed when the officer loses someone he loves.

Those who view death as the doorway into eternity will normally feel a sense of tender emotion. they may feel stress because of man's inhumanity to man or man's inhumanity to himself.

The job demands that an officer view death scenes. However, it does not demand that each officer view them in the same manner. Whenever I see a body, regardless of the circumstances surrounding the death, I view it as a wax figure in a museum. Some officers see the dead as mannequins. Others may view them as evidence in the overall investigation. Still another may see the victim as only an object that once was alive and is now only a shell. Whatever image one may concoct, the result is the same: dehumanization of the victim. This isn't wrong, in fact, it is a natural part of our built-in survival kit.

Some officers would rather not show their real emotions at a death scene. Certain feelings are simply natural to human beings, and should not be construed as signs of weakness. For example, when alone in a room with a body, experiencing an eerie feeling; if the victim is child, female, or helpless individual, feeling intense grief; if sexual deviation is involved, feeling repulsion.

Officers also feel angry if death and mutilation are related to drugs or alcohol; if the victim was viewed by a family member, especially children, the officer may be moved to sympathy; and he will feel shock, the same as any other individual, if the victim is known to him personally.

Though most officers will contain themselves at the scene, if the victim reminds him of a loved one, he will probably cry when alone. It isn't uncommon for sickness to affect those who must work an exceedingly violent scene. Nausea is common if the odor is overpowering and the body of the victim is decomposed.

The dead person troubles us, disturbs our peace, gives us the creeps, stirs our fears, and gives us nightmares. Even the policeman's badge isn't thick enough to prevent it, and there isn't enough authority in the book to ward it off.

But we aren't defenseless. Take a look at some safeguards against being overcome:

Talk it out. Talk is good therapy. Some officers choose to talk to other officers. However, there is always the fear of appearing weak in the eyes of a comrade if true emotions are revealed. In departments where a chaplain is present, the officer may feel a freedom to bare his soul with the assurance of strict confidentiality. The officer who shares with his spouse is utilizing a good source of understanding. Every blood and guts detail need not be divulged to relate the story and get relief.

Crying is OK. Obviously there is a time and place for everything, but it should not be forgotten that crying makes us no less professional. Tears are terrific for washing away hurt. Some officers have wept at the scene and there is certainly no reason for apology, but whenever possible the officer will normally do this when alone.

Humor. Although humor should never be crude, and great precaution must be taken to avoid its use in the presence of family members or persons outside the police department, it should be recognized that well-placed humor is great release. It isn't necessarily disrespectful to use some humor at a death scene. Humor is a real salvation to those who use it wisely and at the appropriate place and time.

Take a break. Though it is necessary to view the victim, photograph the entire scene, and sometimes handle the body, it isn't necessary to stare at it over a prolonged period of time without a break. Take time out to regroup your thoughts, get a breath of fresh air, and let your mind remove itself from the ugly sight of death.

Be prepared for, and understand something about, post-traumatic stress disorders. Two types of disorders are prevalent. First, the acute disorder has symptoms which occur immediately after or sometime during the event. They are things such as frequent urination, or an uncontrollable desire to just break away and run form it all. After a particularly difficult experience with a tragic death situation one officer said to me, "I hate this fob, I just want to get out of the whole mess." It had only been a few days before that he had sat in my office and related how much he loved police work.

Second, the delayed disorders are those which may occur two days, two weeks, or two years after an event or series of events. They include things such as sleep disorders, flashbacks, isolation and depression. I know one officer, who after working homicide in a major city, requested a transfer to any division in the department which didn't deal with death. Death had stacked up on him until he felt he could not stand it if he had to see another body. The number of gruesome death scenes the officer has experienced in a short time will obviously make him more prone toward post-traumatic stress disorders, especially the inexperienced officer.

The officer who is honest with himself will accept the fact that he is only human, and it is ;natural for humans to hurt at the sight of needless death, injury and mutilation. Wise is the officer who takes off his superman suit, and allows himself to be just plain Clark Kent.

Officers can't avoid blood in the alley and brains on the ceiling, but they can learn to deal with it in a manner which will preserve their own mental and physical health. If professional help is needed, get it. It is a weak person who thinks of himself as too strong to need support.

How strongly a person reacts to a situation depends on that person as an individual. The officer who continually holds in painful emotions or does not react at all, is a likely candidate for severe emotional problems. The wise officer takes the precaution of watching the living, avoiding needless danger, and not living in a mental graveyard.

Remember, the living can kill you physically, while the dead can kill you emotionally.

Each death is different. When a parent dies, one loses the past. When a spouse dies, one loses the present. When a child dies, one loses the future. Even though grief is a common human experience, it is as individual as fingerprints-it shows itself in widely differing ways.

The following are some guidelines for the sorts of death experience that are encountered infrequently-where information may be scant. To be effective as clergy persons, we must be aware of al kinds of loss, the frequent as well as the less common incidences of death: loss of a newborn, sudden infant death, a death that was unanticipated, suicide, and the special feelings of the clergy person-so well acquainted with grief-when a loved one of his own has died. There are sources of help to assist the bereaved in coping with grief and loneliness and provide for continuing reassurance and understanding. People differ more widely in their reactions to death than they do to any other human experience. There is no magical procedure that will comfort all people, either at the time of death or during the period that follows.

The problem is not that the clergy person will not always succeed in grief counseling. The tragedy is that the clergy person may not be well-informed and at least attempt to do his or her best to help people in times of crisis. As Mark Twain said: "It's not what people know that gets them into trouble; but it's what they know that isn't so."

People differ more widely in their reaction to death than they do to any other human experience.

While bereavement and grief are the most universal of all human experience and the most human - they are also the most painful. Information is not adequate if it remains with the clergy person alone. Those insights must be shared in a non-threatening way to help make the agonizing period less stressful and less frightening. Then survivors will not be caught unaware and unprepared for their often bizarre but rarely spoken of sensations, thoughts, and behavioral changes. They need to understand that these changes are normal in the face of the very unusual and traumatic death in their family. And don't forget: just being with the bereaved is often more important than what you say.

How often do newborns die?

Within the first 28 days of life, approximately 35,000 newborn infants die in this country every year. In addition, 33,000 fetal deaths or stillbirths occur after the 20th week of pregnancy. Taken together, these 68.000 deaths add up to one death every seven minutes. The cold statistic translates into an enormous collection of human suffering for surviving parents, siblings, and the greater circle of family and friends. A child's death is no longer in the ordinary order of events. we expect older people to die-but not young babies. It doesn't seem fair before they have had a chance to live.

Stillbirths occur in about one in 80 deliveries. After the birth and death, there is usually a conspiracy of silence. Parents are rarely encouraged to see and touch the dead body. Frequently, the baby is not given a name and the mother is quickly discharged - as if nothing had occurred. Rituals and rite of passage are seldom offered. The funeral (if there is one) is open private, without the mother and sometimes without the father being present. Most health professionals do little or no follow-up. Still birth is a non-event. It is as if the mother never carried her child. As if the father had no hopes and aspirations. There is no communication about the misery, the guilt, the shame, the failure.

First, help the family to face reality. The child is dead. And no matter how brief the life, there are deep emotional attachments. The parents desperately need to cope and respond to their loss. How hard it is to grieve the death of a dream! Help the family make their baby-and their loss-more real with something tangible to hold on to-a hospital bracelet, a lock of hair, photographs, birth and death notices. These reminders dramatize the fact that a profound event indeed touched their lives, ever so swiftly. Let parents mourn a reality, not an illusion.

If the parents desire, let them view and touch their dead child. Too often, the infant is rushed from the mother to a special (care) unit, never to be seen again. Many parents who have had the opportunity to hold their child have remarked how therapeutic this touching had been. "Now I know my child lived. I an better able to accept that he died." This is true even when the infant is physically deformed. Beauty is in the eyes of the beholder.

As options are offered to the family, describe in advance the child's appearance, explain that the body is cold. We may offer our support by saying: "If you want, I'll stay with you. tell me what's best for you." Understand that funerals are not solely for people who have lived a long while. The importance of funeral rituals for infant deaths has been emphasized by Dr. D. Gary Benfield, Director of the Regional Neonatal Intensive Care Unit, Children's Hospital Medical Center of Akron and Jane A. Nichols, Bereavement Consultant. They afford both closure and relief.

There is no classical case. Both rich and poor, white, black, and yellow are the victims. SIDS is not preventable no predictable. The infant is usually put to bed after a feeding without any suspicion that something is out of the ordinary. Sometime later, a few minutes, several hours or the following morning, whenever the parents next check on the baby, the infant is found lifeless. There is no outcry, no struggle. The infant may be lying face up or face down in the crib. occasionally, there is a pinkish froth coming form the hose, or a spot of blood on the bed. The face and remainder of the body may bear bluish-purple discolorations which may appear to be bruises. These are normal post-mortem changes and should not be mistaken for injuries.

"What did I do wrong?" "Was it my fault?" "Why didn't I detect that there was something wrong with my child?"

Lola Redford, wife of actor Robert Redford, tells how guilty they both felt after their first born died in his crib. "I had this notion that when you come from strong Mormon stock, you just don't have children who die." She also spoke of not being willing to hire a baby-sitter for her two subsequent children, of spending all her energy "guarding" them. For almost nine years, I gave those children my undivided 100% neurotic attention. I was so afraid they would die."

Some parents believe that they accidentally killed their child by allowing the infant to suffocate in the bedclothes or choke on regurgitated milk. There is no basis to believe this is true.

Grandparents are often unaware of the mysterious, sudden, unexpected death called SIDS. They may believe that the tragedy could have been averted by some action of their children such as a more proper diet or closer observation during a virus. Worst of all, they may believe the baby died because of some omission or neglect. Grand parents need continual reassurance that the cause of the disease remains unknown and that the parents did not cause nor could they have prevented this crashing, bitter disappointment.

Grandparents often take charge of the funeral arrangements. After all, they are older and more experienced in the sad preparations for death. The clergy person might of well to say: "I know that you, too, are going through an ordeal. But you know of course, that your children are the ones who feel the loss most keenly. Perhaps it would be better for your children to come to their own decisions about what is best for them!"

Tell them that SIDS occurs in apparently healthy, normal, thriving babies who have received the most skillful and loving care. The death does not reflect in any way on the ability of the parents to care for their children SIDS is not suffocation or pneumonia. They did nothing to cause death

Usually the examination reveals no disease sufficient to account for death. In approximately fifteen percent of the cases, however, post-mortem examination exposes a previously unsuspected abnormality or rapidly fatal infectious disease. This is one of the reasons autopsy on these infants is so important.

Explain to the family that evidence underscores the point that the infant was not in pain. In most cases, death is sudden, almost instantaneous. There are examples when the child "just stopped breathing" in the arms of the parent. The adults report a sense of peacefulness and quietude.

Once every minute, someone attempts to kill himself or herself with conscious intent. Sixty or seventy times a day these attempts succeed. In America, the problem has reached somewhere between twenty-two and twenty-five thousand annually or one suicide every twenty-six minutes.

Who would dare destroy something so precious as life?

Almost everybody at one time or another contemplates suicide. Death is one of the choices open to human beings. Suicide has been known in all times and committed by all manner of people, from Saul, Sappho, and Seneca to Virginia Woolf, James Forrestall, Marilyn Monroe, and Ernest Hemingway. Every person is a potential suicide.

Of course, natural death has its share of emotional overtones: Loneliness, disbelief, heartache, and torment. With self-inflicted death, the emotions are intensified to unbelievable and unbearable proportions. Those left behind experience not only pain of separation but aggravated feelings of guilt, shame, and self-blame.

The act of self-destruction raises the obvious questions, "Why?" and "What could I have done to prevent it?" Anxious and grief-stricken, the survivors ask, "How can I face my friends? What will they think of me?" Death by suicide is the greatest of all affronts to those who remain. Special counseling skills are needed to cope with the runaway emotions of the bereaved. Suicide stigmatizes not only the victim but the survivors as well.

Judaism affirms the sanctity of life. Suicide is taboo. The custom arose of burying the suicide outside of the cemetery proper as a token disgrace.

It is understandable that when the survivors hear the shocking news their first impulse is to hold the funeral as quickly as possible. After all, there is an aura of shame and dishonor. As a result, a private service may be contemplated for the immediate family only.

However, no matter how great the humiliation the relatives cannot hide from the bitter truth. No one can run away form pain. A private funeral seems to say that because the family is unable to bear the disgrace they want to keep it "secret." The mourners overlook one important fact: When given the opportunity, friends can be of inestimable value. The funeral, where no one is invited but all may attend, affords a sharing occasion for supportive love at a time when it is so desperately needed. One person is no person. The solitary heart must throb with the caring heart of others.

Many people who themselves have experienced the death of a loved one have developed tremendous gifts of insight. They understand the value of sharing. They may help the bereaved to reach out of their isolation to an important support system. Fellow sufferers often become second families to each other. Some helpful organizations include:

The most common cause of death in normal infants and graduates of Neonatal Intensive Care units during the first year of life is the Sudden Infant Death Syndrome (SIDS). One of the fastest growing industries in the health care field is providing home monitoring. Subsequent siblings of SIDS victims are at increased risk for SIDS themselves, or are they? What should we do for the child with an apparent life-threatening event? How does all of this relate and how does it apply to perinatal health professionals?

Is not possible to discuss home monitoring and apnea without talking about SIDS. They are regularly linked in the minds of the general public and the health care community as well. It is important to clarify that the relationship of SIDS to apnea is only circumstantial. There is also no conclusive evidence demonstrating that monitors can prevent SIDS.

By definition, SIDS is "the sudden death of any infant that is unexpected by history and in which a thorough postmortem exam fails to demonstrate an adequate cause of death." Therefore, SIDS can only be declared a cause of death after an autopsy. What the pathologist is really saying is that he does not know why the child died.

SIDS is the number one cause of death for all infants between the ages of 1 month and 1 year. The rate is about 2/1000 in the United States and kills about 6000 babies a year. The peak ages for death are from 2 to 4 months, with a sharp decline after 6 months of age. More deaths occur in the winter months. We do not know why there is an age or seasonal variation.

The parent needs to know that SIDS cannot be predicted. The parents are blameless. The first real indication of increased risk for SIDS comes when the parents find the baby already dead. The fear of SIDS exists for all families. We need to be extremely cautious about adding to that fear by exaggerating the incidence of SIDS. We also need to be cautious about leading families to believe that we know what SIDS is and how to prevent it. We clearly do not.

In some ways SIDS following a premature birth causes even more anguish for the parents, and certainly hospital staff, than the death of a normal child. This is due to the fact that a premature baby may struggle to survive for weeks and sometimes for months, finally leaving the hospital and going home. For the perinatal health professional there has been more time to build a relationship with the family during the premature baby's hospitalization. The infant's death comes as a cruel blow to all who have provided care. Sometimes hospital staff members question their clinical judgments regarding discharge. They wonder if they missed something, or left something undone. Sometimes the family places blame on hospital staff. More often, though they share the tragedy.

Prior to discharging a premature infant, the basic work with the family may center on the resolution of acute distress and fear. All families need support and information about the child's condition and likely clinical course. They need the opportunity to explore their feelings about grieving for the healthy, full-term baby they expected, but did not get, and to learn to accept and appreciate the baby they really have.

Throughout the infant's hospitalization, the time is available to assess the family member's strengths, weaknesses, and interpersonal styles, as individuals and as a unit. We can help the family use or build networks. We can assess their ability to problem solve by watching which coping mechanisms they choose, and how well they use them.

Particular areas need special attention. By the time discharge draws near, the parents have usually become familiar with monitors and may be uncomfortable about going home without one. The majority of infants who have not had significant apnea or bradycardia for the week prior to discharge are not in need of home monitors. Infants must be carefully selected for monitoring and the advantages and disadvantages of this option clearly delineated. Once decided, staff should teach the family how to use the home equipment while in the hospital and use it for the remainder of the infant's stay. This plan helps establish an easier transition from hospital to home. It also allows the staff to tailor the learning process to the individual family's needs and gives the family a chance to practice in a safe environment. It also enables the hospital staff to reinforce the concept of competency of the parents as the primary caregivers. It is vital that the apnea program coordinator and nurse work as a team. It is also important that the parents become part of the team caring for the infant and responsibility for the child's well-being can be shifted gradually form staff to parents. Apneic events can be simulated so that parents gain additional experience with problem solving.

The process of building a relationship with the family following a SIDS death can begin during the subsequent pregnancy, sometimes even during the period between the SIDS death and the next pregnancy. The sooner the process begins the better. The pregnancy following a SIDS death primarily will deal with two basic issues, the SIDS death and safeguarding the expected child. The first step is to confirm that the baby died from SIDS by reviewing the autopsy. We have found several cases where the previous sibling had not died from SIDS. Revealing this to a family and helping then deal with such information requires sensitivity and time. The second step in the counseling process is to determine what needs the family has. There is often much unfinished business related to the grief process, especially if the child has recently died. For some parents this is the first time they have ever talked about the death of their child and the impact of that death on them separately, as a couple, and as a family. It may also be the first time the parents have openly discussed their feelings, fears, and sense of loss with each other. I feel strongly that the initial session should be with both parents. A separate session can include siblings, grandparents, and other as appropriate.

Sessions can be done jointly by a nurse or a worker, and the physician. Families are more incline to believe the facts about SIDS from a physician. They usually direct medical questions to him or her. It is helpful to have a health team composed of one male and one female interview a couple to decrease issues of power, control, and transference, and enhance modeling and support. Any team member can provide legitimacy and offer generalized statements about grief reactions or SIDS misconceptions.

It is important to assess how other siblings in the family (if any) are dealing with their own sense of loss and their reactions to the subsequent child. Parents may need encouragement or reinforcement to approach such topics with their children. They also may need education about what is age appropriate. Parents and children alike may have been trying to protect one another by not sharing feelings of grief, anger, fear and guilt.

Equally important as the meaning of the loss is the meaning and place of the new child in the family. Is the child thought of as replacement for the dead infant? Or is the child thought of as a child in his or her own right?

Families may have the idea that the subsequent sibling is somehow sick or different that other newborn infants. Parents may experience strong tendencies to be overprotective. Others may find it difficult to approach the baby and begin the process of bonding and attachment. The vast majority of families can successfully accomplish the task of incorporating the new infant into their family structure in constructive ways. What they need is information and support over time. Meeting those needs is certainly not new to perinatal health professionals.

The family concerns for safeguarding the new infant present themselves in a wide variety of ways. Some families will not leave the hospital without a monitor; others will not use the monitor under any circumstances. Some wait to decide until the child is one month old, and some when the new baby reaches the age at which the previous child died. The decision to monitor or not belongs to the family.

Currently there is no testing available, whether simple impedance or full scale sleep studies, that can identify infants at risk for SIDS. Indeed, Southall's prospective study of over 9000 infants demonstrated that two channel impedance recordings were not predictive. Finally, parents and health care professionals need to be clear that monitors cannot guarantee that an infant will not die from SIDS.

The perinatal staff need to be sensitive to parental fears and anxieties. The usual nursery, postpartum and visitation arrangements may not be appropriate or adequate for these families. Mothers may be afraid to have rooming-in, or afraid to have the baby out of sight. Fathers may need to have longer and easier access to mothers and babies. Older siblings may need to actually see and touch the new baby. Mothers may have problems with breast feeding as a result of tension. Infants might have to stay in the nursery for observation and testing. Some may have to be transferred to hospitals equipped for such testing.

There is a special category of SIDS sibling, when one infant of a multiple birth dies from crib death. The survivor is at increased risk. Most programs will then automatically evaluate and monitor the survivor. The impact of the death is compounded by the problems associated with home monitoring. These families need especially intense and prolonged support.

Parents are routinely seen in emergency departments with infants who have stopped breathing, turned blue or are limp or unresponsive. All of these complaints need to be taken seriously. If the infant arrives in poor condition, or if paramedic reports confirm the parent's story, then the child is seen and evaluated, even admitted for observation or workup. If the infant arrives in good condition with nothing abnormal on exam and there is no corroboration of the event, many facilities send the family home. Most parents get a clear message that they overreacted.

It may be that the infant experienced "normal" (very brief) apnea, or a physiologic event during sleep. Perhaps the child choked on secretions and could have spontaneously resolved the spell with time. Providing the parents with these explanations for physiologic apnea is a component of quality care. However, the worst scenario would be to send the family home because the baby looked fine, only to have the child return dead because of an undetected etiology.

The burden of proof to document the etiology of the spells resets with the medical staff. The reported event should not be taken lightly regardless of the child's apparent good condition.

If the parents work and the child is brought in by a caregiver, or if one parent saw the episode and the other did not, a more complex situation exists. Those who did not see the episode may not believe it really happened, or that it was a severe as reported. Or there may be anger and blame directed toward the caregiver for not really watching the baby or not responding in an adequate manner to the medical emergency. At the same time the caregiver may be feeling totally responsible for the event and need support for the quality of care he or she provided.

Each family member or caregiver will assign meaning and significance to the event. Most people equate any cessation of breathing, whether awake or asleep, with crib death in the making. Most people fear that there would have been brain damage or death if then had not intervened. Most will still have questions and fears about the possibility of brain damage. Most believe that the spells will recur.

It is important to know if this is the child's first episode, a repeat episode or an episode that has happened during home monitoring. The concerns of the parents may vary. if it is one of many episodes, the family may feel the child is not making progress. They may be angry with the medical staff for not identifying and better managing the child's condition. They may be resigned and feel defeated in their efforts to care for their child, or they may be relieved to have the child hospitalized and the burden of care removed from them, at least for a while. They may feel vindicated with a repeat episode when the initial episode was not taken seriously.

One of the most frightening things we can do to a family is to label these episodes as "near-miss SIDS" or an "aborted crib death." Can you imagine what you would think if you were the parent? You would fear or expect a real crib death are some future time. What does that notion do to feelings of security, family structure, and the continuation of attachment to the infant?

HOME MONITORING: IMPACT ON FAMILIES

It is not possible to introduce the element of home monitoring in to a family without creating change and the need to accommodate. Not all the changes are negative, not all are positive, but all families change.

There is always the possibility that the monitored child will be seen as ill or different from other newborns or other children in the family. At times the issue of home monitoring is seen as the cause of problems that actually predate the monitor and the child.

The basic explanation for many of the medical problems that result in home monitoring relates to developmental tasks the child must accomplish. Seen in this way, most families can begin to see their child as more normal that sick. This is a key concern for families and has to be addressed. Most often the social worker is the first to appreciate this.

Child abuse potentials exist for parents of monitored children just as they do far any et of parents. There are high levels of fear, frustration, anger, and isolation. Parents may be overwhelmed by the incorporation of the child into the family unit, let alone a child attached to a monitor. Assessing levels of parental expectations and realities is essential.

Practical issues of everyday life are also affected. The caregiver must always be physically close to the child to answer an alarm, as well as being able to hear the alarm. Simple chores like washing dishes or running a lawn mower have to be considered from the standpoint of alarm response time. None of these are impossible to do, but the parents need help altering their perspectives and learning to deal with such issues on their own.

There are many concerns about home monitoring. These notions may be held by the family, friends, relatives, or neighbors. We can provide anticipatory counseling so parents can go home knowing what to expect. Common misconceptions are 1) that the monitor can electrocute the child, 2) the child will be developmentally delayed by reasons of being confined and having movement restricted, 3) the child's condition is contagious, especially if the cause of the apnea is unknown, or if this is a SIDS sibling, and 4) the monitor will prevent death.

In the face of such enormous responsibility, stress, and fear, it is possible that the mother will become totally absorbed in the baby. This preoccupation can be to the exclusion of self -interest, involvement with other siblings, career goals, personal relationships, social activities, and marital relationships. Discord and dysfunction can occur in any or all of these areas. Sometimes the mother is burdened with the entire responsibility for the care of the infant. This may evolve from a lack of resources for respite. It may be self imposed, imposed on her by other family members (often the father), or because she believe the infant is vulnerable despite the monitor.

Parents can be overwhelmed emotionally by the impact of monitoring. It can be frightening to assume such responsibility. Strong negative feelings toward the child are not uncommon. The parent may feel anger and resentment toward the child. Just as quickly they may feel strong urges to protect and shelter the child. Having a chance to explore the variations in feelings prior to discharge is important. It is also vital to assess those feelings after discharged by phone, home visit, and use of public health nurses and or parent aides.

Parents need help to sort out their feelings related to home monitoring. They need to look at their expectations and make adjustment to their real situation. The implications of CPR need to be addressed. What does it mean to assess you child as lifeless?

It would be ideal for parent s to have time away form their monitored child. This is not always possible for many reason. The parents may be too fearful to leave the child. Family and friends may be unwilling to assume the responsibility. Day care regulations may prohibit accepting children using medical devices. Home care nurses may not be familiar with home monitoring. Costs to the parents may be too high to pay for such care.

In the face of so may negative elements it might be expected that parents would strongly resist monitor, or quickly abandon it once they got home. Yet many studies and my own experience say just the opposite. What seems to make it easier for them is strong psycho-social support, good education, cease explanations of the need for monitoring, continuous access to service people and medical care, established criteria for discontinuation of home monitoring, and help during the process of weaning from the monitor. For the great majority of families at hospital, the levels of stress and anxiety were greatly reduced. Babies were returned to the family structure as safely and as soon as possible. Parents again gained a sense of control and mastery over their lives.

Training for home monitoring can be done by a variety of health care professionals - nurses, respiratory therapists, health care educators, social workers, or physicians. The professional level is not as important as the quality of the educational process in combination with identifying and meeting psycho-social needs.

Physicians are neither trained nor prepared for delivering the news of sudden death. the unique stresses which tax a physician during the medical or surgical emergency can affect the way he delivers the news. There are distinct strategies for preparing and delivering the news of death. An informative, chronologically ordered account of events up to and including the death, delivered after taking time to review all the facts, makes the task less stressful and is less likely to elicit unnecessary confusion and anger in survivors.

In dealing with medical emergencies, the physician is prepared to act quickly and efficiently to sustain life. Despite every effort, some of the patients in serious condition will die, and the physician will have to inform the relatives of the death. Since most physicians have had little formal preparation or training for this difficult task, they may experience anxiety before and during the encounter, and may be troubled by doubts about their style of delivery.

This article discusses the transition from dealing with medical trauma to approaching the family, and suggests ways of delivering the news of death.

PERIOD OF EMERGENCY TREATMENT

Medical emergencies are intense, action-oriented situations posing life-and-death problems that demand immediate identification and rapid attempts toward resolution. Diagnosis and treatment must occur almost simultaneously. This requires a high-quality combination of concentration, manual dexterity under pressure and leadership in applied medical-technical skill. Strong emotional reactions may be elicited by severely injured patients who are very young, who resemble one of the physician's family members or who are victims of criminal acts. These emotions can detract from the clear, objective concentration that is needed for effective performance. Setting aside these normal responses to maintain objectivity cannot be done without great effort and further energy drain.

When a patient dies after intensive efforts to save him, there is sometimes a dramatic change in atmosphere as activity comes to a halt and technicians, aides and nurses walk out to the treatment room. At this point, the physician is likely to be at a mental and emotional low point. When several hours of work and risks have been compressed into one, a person can be left temporarily exhausted. Unfortunately, it is at this time that the physician has to face family members and inform them of their loss. He cannot be certain how they will react to hearing such news; each family is capable of a wide range of feelings and expressions. This adds an immense surprise potential to the situation and may contribute greatly to the physician's anxiety.

The transition from dealing with medical trauma to dealing with family trauma is quick and dramatic. Objectivity must now be tempered by empathic sensitivity; role responses are replaced by interactional responses, and mechanical manipulation must give way to concerned involvement. it is not surprising that many physicians develop a defensive maneuver to protect themselves from the stress of their situation. One common maneuver is to avoid thinking about, preparing for as long as possible after the death has re-involving oneself with another patient. Another way the physician may minimize stress and discomfort is to proceed from the medical trauma to the family trauma without hesitation. This decreases the time available for experiencing anxiety about the task to come.

While at first glance these tactics appear to be effective ways for physicians to reduce stress, they may have the opposite effect. By delaying the news, the physician may increase the relatives' anxiety and thus decrease their ability to assimilate, acknowledge and deal with grief. On the other hand, rushing in unprepared increases the likelihood of presenting the news in an awkward manner.

There are other, more effective ways a physician can prepare himself to deal with the patient's family. Some helpful suggestions follow.

When treatment is finished, identify any strong feelings you are left with. An unusually hectic trauma case that results in death may generate a mood of frustration and resentment. Such feelings should be set aside for later resolution rather than carried into the family situation. Relatives may interpret these residual feelings as being directed to ward them. One family remarked that the physician must have been angry because they had not called the ambulance soon enough.

Remember that your limitations are related to your particular level of capability on any given day. If you are at the end of a particularly busy day, you may be less than able to deliver an objective, reasonable and calm presentation of death to a family. If this should occur, you might ask another physician who was involved in the case to assist you or take over the task entirely.

Before facing the relatives, review and, if necessary, make notes of the major points, symptoms, treatment procedures and patient's responses as they occurred. This will order your thoughts and help identify or anticipate areas which might be difficult to explain. One or two minutes of preparation can prevent unexpected verbal stumbling blocks during an unavoidably stressful situation.

Have someone accompany you, if possible. Choose a person who is willing and able to provide additional support, because it is helpful to share the emotional demands of the encounter with someone.

Find out as much as possible about the relatives to be confronted. The main points are who is present, what their relationship is, what they have been told about the onset or treatment and how they have reacted to the situation thus far. Obtaining this kind of basic information lessens the surprise potential and can better enable you to prepare for special problems. These facts may be gathered from any person who has had contact or been involved with the family, such as a registration staff member, a social worker, a nurse, a volunteer, the ambulance driver or a member of the pastoral care staff.

The rational approach to informing a family of a death is nothing unique or extraordinary; in fact, it is probably the way most physicians inform relatives of illness or injury situations which do not result in death. Common sense and simple terminology are used to tell the family what problems occurred, what actions were taken and what the patient's response was. This information is given in chronological order. Consider the following example:

"Mr. Smith arrived here at 7:10 p.m. He had collapsed at the grocery store. The ambulance crew found that his breathing was extremely shallow and that his pulse was very weak and irregular, so they began giving him cardiopulmonary resuscitation. That means pushing down on his chest in regular forceful rhythm while forcing in air to breathe for him. when he arrived here, we continued CPR and obtained an ECG tracing of his heart activity. We found ;that his heart had stopped beating altogether, so we immediately gave him several heart medications. Next, we tried to get his heart to copy the rhythm of a temporary pacemaker we inserted, but the heart didn't pick up the device's rhythm. After using the paddles and mild electric chock, we had no other ways available to us. I'm very sorry to tell you that we pronounced him dead as of 7:50 p.m.

 

When presenting this material to physicians, I am often asked two questions. One is: Why describe treatment and response when relatives are in a crisis state and are not likely to hear or understand much of what is said? This assumption is not valid. In a family of five, there are usually at least one or two who will accurately hear, perceive and retain what is said. These people will be able to repeat the facts to those who did not hear and to other relatives who will need an explanation in subsequent hours. Even those who do not full comprehend the specifics of what is being said will be able to recognize the amount of effort expended on the treatment attempt. When given this information, many families are amazed at the actual amount of work involved, much more so than after hearing the more common and vague cliché' "We did all we could."

The other common question I am asked is: What should the physician do if he approaches the family and they immediately demands to know whether the patient is alive or dead? When this happens, it indicates that the family has already considered the possibility of death and that they are going to be told. Relatives are more likely to confront the physician with this question when they have been well prepared with accurate updates on the patient's lack of response to treatment or when the patient has had previous severe exacerbations of some chronic disease, such as a previous heart attack. One physician responds to this question by saying he would like to explain briefly how things went; he then proceeds if the family finds this acceptable. Most family members will focus intently on every word of the physician's account. Frequently, they will add up the facts as presented, and one will utter the conclusion of death before the physician does.

The gentle and gradual yet factually informative approach facilitates an intellectual acknowledgment of death and a more solid cognitive basis from which to react with normal grief. It is also helpful in providing more accurate data with which to prepare and inform others of the death.

Some physicians add certain information that is not actually necessary to an understanding of how the death came about. Such information may include the likelihood that the ambulance crew's resuscitative efforts were more than adequate and that the patient was oblivious to pain or unaware of his predicament. Without this information, many relatives envision the patient's last minutes as being filled with intense pain amid strange surroundings and with feelings of being abandoned by the family. Some of these notions spring from the survivors' own fears about death, and their impact can be minimized by factual information to the contrary. The following case shows that the importance of these subtle points cannot be overstated.

After a head-on car collision, a three-year-old child was brought to an emergency room. The child's mother, who had not been in the accident, arrived at the hospital an hour or so later and was informed of the death. She was well supported by nursing personnel and physicians until her relatives arrived. During the following year, she had a recurring nightmare of helplessly watching her son screaming for help and suffering form pain while he was pinned in twisted wreckage. After consulting a therapist, she returned to the same emergency room and was fortunate enough to find a physician who had been involved in the case and recalled it vividly. He informed her that the child's particular head injury indicated that he had been rendered totally unconscious immediately on impact. The woman's nightmares ceased.

If only a few people can be spared months of unnecessary anguish, the extra time involved in delivering the news of death in this way is justified.

 TECHNIQUES TO AVOID

The physician walks in, shakes his head and says, "I'm not going to pull any punches - he's dead." His blunt, curt announcement increases the likelihood that the patient's relatives will react with anger and confusion. The anger that this delivery elicits probably relates to its basically rude, insensitive tone at such an emotionally vulnerable time.

THE APOLOGETIC APPROACH

The physician walks in, sinks into a chair and sighs heavily. Hesitantly, he says, "This is one of the most difficult things I have to do as a physician..." or "I really hate having to be the one to tell you this but..."

This approach appears to be a sensitive way to approach the family. It may be an honest way to begin, because informing the family of a death probably is one of the most difficult tasks that a physician has to perform. The apologetic approach can be called a plea for mercy because it implies a need for forgiveness and thus may elicit pity and support form the relatives. That, in itself, is not objectionable because the physician has just provided a great deal of intensive work on behalf of the patient, and some expression of gratitude and empathy can be appropriate. The problem is that often a physician will elicit this response, accept the family's supportive attempt and then excuse himself to return to other patients. he is essentially getting more nurturing and support than he is providing, and thus is an additional drain on the family's already taxed resources.  

It is common to read in newspapers that the "cause" for SIDS has been discovered. Some recent examples are elevated T-3, maternal smoking, prematurely, poverty or viral infection. I believe that SIDS is not a disease, but a way of dying. It's an episode which occurs over a very brief span of moments that results in the death of a baby. Things which proceeded that episode may or may not be relevant to SIDS. There are lots of so-called predisposing factors such as prematurity, but being a preemie is not the "cause" of SIDS. So many of the "causes" that we read about are really factors which describe a population of SIDS victims, but do not explain the cause of death.

In approaching SIDS, the thing that happened last is most important, namely how did the baby die? In other words, what was the mechanism of death? Perhaps the most significant original observation I've made on SIDS bears on that specific point - how they die. It is my belief, based upon many research findings, that at the end of a breath, as a baby lets out air and is ready to take a new bath during sleep, the airway closes off in the back of the throat. That closure makes it impossible for the baby to take a next breath. As a result, the baby may change position. The face may come to be straight down into the bedding, or might get wedged in a corner of the crib, or a blanket may be pulled over the head. These conditions may suggest the baby suffocated, but in fact, specific research has been done proving that even tucking the blankets on all four sides of the crib mattress does not cause blood oxygen levels to drop. So even when appearances may suggest the baby might have suffocated in its bedding, these appearances are misleading, and are the result of the way they die, not the cause of death.

If there is evidence of airway obstruction, how can we so confidently rule out suffocation? I emphasized earlier that the obstruction occurred at the end of a breath. One of the findings in the examinations of the SIDS babies are little pinpoint hemorrhages (petechiae) found in the chest organs of 87% of the cases. These hemorrhages result from instantaneous and complete closure of the upper respiratory tract at the end of a breath. If I were to go out and attempt to strangle somebody or put a plastic bag over their head, it would be almost impossible to produce the hemorrhages. The findings differ in SIDS and suffocations, with approximately 95% confidence levels.

So what causes SIDS? Again, I believe that SIDS is not a disease, but a way of dying. The mechanism appears to be sudden obstruction of the airway during sleep.

Why would the airway become obstructed during sleep in a healthy and thriving baby? Nobody knows for sure. If one accepts that we understand how they die, the next question is why do they die? A concept that I have found appealing for many years is that this stoppage, or obstruction of the airway is not due to a disease process or an abnormality of the baby, but is a reflection of the fact that babies at this time of life are undergoing an incredibly rapid state of growth and maturation.

Many important changes are occurring at the age when most SIDS occur. The infant is, among other things, coming into an age where he is beginning to sleep through the night. That's not just a simple change in habit pattern, but a change that is very fundamental and has to do ;with control mechanisms in the brain. Centers that are beginning to be active in the baby's brain didn't even exist when that infant was born. Virtually all of brain growth occurs in the first two years of life and the growth rate in the first six months is the most rapid of any time in life. During the time when these important control centers are in a period of transition, abnormal messages might come down to the organs of respiration, one of which is to "close off" rather than "open up." Normally, at the end of a breath, the throat collapses or closes, then opens up prior to a new breath being taken. But if the wrong message comes down from the brain, the throat may stay closed instead of opening. That wrong message isn't necessarily a result of this baby being abnormal, but occurs in a normal baby whose brain is growing at a tremendously rapid pace.

This view of SIDS is certainly one person's view; it's not shared by everybody who works in SIDS. It's a view which I find very reasonable and helpful; the concept is that the baby was normal when it dies, not abnormal. There is no way for anyone to predict that a normal baby is going to have this kind of abnormal event. Many factors may contribute to that event. Minor irritation of the airway may, by increasing the sensory input coming up the nerves form the throat to the brain, increase the likelihood of abnormal messages to come down. Thus, perhaps we have a connection with the minor respiratory infections which are present in many cases.

In doing a post-mortem examination, we don't see the lethal mechanism directly. After death, muscles relax, so the pathologists don't find the throat muscles clamped shut. There are little things that we find consistently, such as the pinpoint hemorrhages I mentioned earlier, but none of those things account directly for death. They are only clues to the way they die, and helpful to the pathologist in diagnosing the case as SIDS.

The SIDS victim did not die of nothing. The baby died of a very distinctive entity. Any of you who are familiar with sudden infant death will know that the typical case falls into a narrow age range, and seemed to be okay except maybe for a cold, ate his last meal normally, was put to bed and was later found dead. You know when you hear that story what the pathologist is going to say. But when the story is different, then you really want to know what the pathologist found. When there are some unusual features to the case, the post-mortem becomes especially important, as there are many conditions other than SIDS which can kill infants and young children suddenly.

If we take all babies under one year, who have 1) died unexpectedly, 2) during sleep, with 3) no history of alarming symptoms, such as seizures, temperature over 105 degrees, and 4) no external findings to allow one to suspect a cause of death (like a fractured skull or a skin rash), 92% of cases will be diagnosed as SIDS after-autopsy. If the infant is 2 or 3 months old, it would be more like a 95% certainty. In some communities it is not possible to get an autopsy, but one can usually do an x-ray examination to add to these four criteria. With the presence of a normal full body x-ray, the chances the death was due to SIDS goes from 92% to 98.2%.

Each of you who has personally experienced SIDS probably feels that your baby in some ways doesn't fit the classical profile. You read about "high risk" babies and it's very easy to confuse the concept of "high risk" with "typical." For example, a "high risk" baby might be born weighing less than three pounds to a disadvantaged family in the winter months. The risk to that baby is perhaps one in 50. If your baby was a full-term, 8-lb. baby who died in the summertime, and was a girl, it doesn't sound typical of the "high risk" baby that you hear about. But, if fact, most SIDS babies are not drawn form the "high risk" population. There are many more babies in our society who are in the "low risk" population, and the majority of SIDS babies are from this "low risk" population. Thus, the 8-lb. baby is a more "typical" SIDS victim than is a 3-lb. preemie. even though that preemie had a higher individual risk of dying. Because there are so many full-term babies, they constitute the majority of SIDS babies. The same principal applies to the other so-called "high risk" factors. Therefore, these things you read about "high risk" SIDS babies often lead to confusion and it is important to understand that "high risk" and "typical" are very different concepts.

Any one case is a single dot on the bell-shaped curve and it could fall anywhere on that curve. The description of a population as a whole does not describe each individual member of that population. That's an idea that's often difficult to get across. I don't know if the totally typical case of SIDS ever has occurred. Every baby that ever died was an individual, and every person who has lost a baby identifies SIDS with that particular individual - the hair color, behavioral patterns, and the medical history of the baby is the profile of SIDS to that parent and family. It's important for families to be able to appreciate that because that baby seemed different than the other children in that family, it doesn't mean that difference was in any way related to the death. My experience has made it very clear that there is no typical pattern of behavior, for example, in babies who later die of SIDS.

This was a death caused by airway obstruction and babies can't cry when their airway is obstructed. So when that baby was crying, he could not have been dying. He cried, went to sleep, and then died later. Not responding to that cry had nothing to do with the fact that the baby died. Babies do not die from crying.

My answer has to be "no, he wouldn't have died then." But how in the would could anybody know at what moment it was going to happen? The way to prevent SIDS would be never to let a baby sleep, and that's obviously impossible.

Again, the answer is "no." My personal experience with over 1,200 cases includes not one example where a SIDS victim was closely in contact with another SIDS victim (except for three cases of twin SIDS cases). There are times in every community when there are more SIDS than other times. When viral diseases of certain kinds are sweeping through the community, the incidents of SIDS will climb. But there is no "crib death virus."

SIDS is not a hereditary disease. There are two widely quoted articles in the research literature that say that it may be familial. Each of those came up with a risk figure that scares everybody - of 1 in 50. Each of those two papers contains some important errors, so that the true figure is more like 1 in 125. Even these figures exaggerate the risk to siblings. There are two reasons for this.

One reason is the familial aggregation of risk factors, such as prematurity. For some mothers prematurity tends to occur repeatedly because of a relaxed cervix or other factors that make it difficult for her body to retain a baby in utero for nine months. Since 20% - 30% of any SIDS series will be preemies, any large SIDS series is going to include lots of subsequent preemies. Therefore, we would expect risk figures somewhat higher risk figures are not shared by the entire population of subsequent siblings, but only by the subsequent preemies.

The other reason is that there are some hereditary diseases that can kill babies suddenly and unexpectedly: heart disease, brain disease and a variety of bio-chemical disease that require some special studies to diagnose. If you take a large population of SIDS cases, it is likely to be contaminated by a few rare examples of these diseases. One of the most common that we know about is something that we now call familial infantile apnea, and that's a strongly hereditary disorder. If in the family background there are a lot of infant deaths, then a genetic disease mimicking SIDS could be a factor of concern. A few families will have genetic disease - most of these will have multiple sudden infant deaths in the family background as a clue to this fact. These few families do have a high recurrence risk the others do not. In summary, there is no reason to believe that most families who experience the loss of a baby to SIDS are at any increased risk of recurrence. 

A call involving a death, especially that of a child, will be one of the most difficult calls a First Responder may be expected to handle. Completing this task in a efficient and caring manner may save the family from the additional trauma of repeated interviews.  all suspicious deaths should be treated! handled as a homicide until proven otherwise. The goal of this class is to point out the difference between S.I.D.S. deaths and those of child abuse and homicides.

1) SB 1067 - Training First Responders
2) SB 1068 - Training Public Health Nurses
3) SB 1069 - Standardizing Autopsy Protocol
4) SB 1070 - State S.I.D.S. Advisory Council

A. Definition

The sudden and unexpected death of an apparently healthy child or infant which is unexpected by medical history and which a thorough postmortem examination and Death Scene investigation fail to reveal an adequate cause of death.

B. No prior History of Serious Illness, Two distinguishing Factors:

1) Sleep
2) Age of babies at time of death

C) Autopsy provides no definite cause of death.

1) S.I.D.S. is an exclusionary diagnosis
2) Negative findings in autopsy

A. Has been studied for years

B. Many theories have been tested

C. No definite cause found (although there are only two (2) pathways to death, respiratory/cardiac).

D. Most recent theories

1) Nervous system disorder
2) Sleep pattern disorder
3) Heart Irregularities
4) Chemical Imbalances
5) Less Receptive to acetylcholine chemical, unable to respond to high levels of carbon dioxide

A. Age

1) 2 weeks to 1 year/ rare after two years of age.
2) Most common between 2 to 4 months (50%).
3) 90% will die before they reach 6 months of age.

B. No recent history of illness

1) No reason to suspect child would die.
2) Almost always occurs during sleep (99.99%).
3) No warning to parent or child care provider.
4) More common in boys than in girls (3:2 margin).

 

1) Maternal Smoking
2) Maternal abuse of drugs
3) Multiple births
4) Low socioeconomic status
5) Premature birth
6) Low birth weight

 

1) DPT and Polio vaccines
2) Periods of Apnea
3) Race
4) S.I.D.S. death in sibling

 

A) No evidence of trauma
B) Appears well nourished
C) No swelling (edema)
D) May have blood tinged sputum
E) Often has moved bowels/bladder as part of terminal event
F) Small marks (diaper rash) look more severe
G) Cooling/ rigor mortis takes place quickly in infants (3 hours), post mortem lividity
H) Other siblings appear normal and healthy

 

A. Shock/ disbelief

1. No known reason to suspect death.
2. No known cause of death.
3. Reactions of parents at the time of death may vary according to each person's coping or managing severe, acute, stressful situations based on prior history and social/cultural norms.
4. Most parent's feel there must have been some way to prevent the event from occurring.

B. Numbness

1. Goes through motions of daily living.
2. Cannot distract parent from hurt.
3. Fear for safety of other family members.
4. Psychosomatic symptoms of illness may develop with other signs of prolonged stress.

C. Release of grief and guilt

1. May not give into the need to release anger and guilt (through crying, ect.) for weeks or months.
2. Parent at this point needs to talk it out.
3. Men and women often grieve differently which can lead/cause communication breakdowns between couples.

D. Dealing with reality and fantasy

1. Begin to accept death as being unchangeable.
2. Realize only they can pull themselves out of the pit of despair.
3. Begin to think about subsequent children, job outside home, or perhaps work with local S.I.D.S. parent group(s).

E. Dealing with memories

1. About a year later, relief periods of not thinking about baby begin to grow longer.
2. More able to talk objectively about their personal grief and death of infant.
3. Will be moments of relapse.

F. Becoming a new person

1. Suffering strengthens and changes a person.
2. Hopefully change is not crippling.
3. Not how fast, but how well person mends.

 

1. Be Sincere
2. Be supportive
3. Be open minded
4. Do not interrogate
5. Be a good listener
6. Be a good observer
7. Allow family to talk
8. Do not be afraid to show emotion

        Typical S.I.D.S. event:

1. Baby found non-responsive! non-breathing
2. Call by responsible party
3. Paramedics/Fire Department and/or Police respond
4. CPR
5. Transport baby to hospital
6. Infant is pronounced dead by Physician
7. Family informed of death
8. Chaplain Notified
9. Coroner is notified/responds
10. Coroner responsibilities: Local Health Department
11. Performs autopsy and death: Provides information and counseling
12. Scene investigation
13. Referral information
14. for peer support
15. Notifies local Health Department
16. Notifies State S.I.D.S. program State S.I.D.S. program
17. Signs death certificate
18. Notifies Parents of cause of death
19. Community education

 

National S.I.D.S. Foundation
Two Metro Plaza, Suite 205
8240 Professional Place
Landover, MD. 20785

National S.I.D.S. Foundation
10500 Little Patuxent Parkway, Suite #240
Columbia, Maryland 21044
Tele: 1-800-221-SIDS
Tele: 1-800-369-SIDS

Guild for Infant Survival, INC. (Orange County)
P.O. Box 17432
Irvine, California 92713-7432
Tele: 714-474-SIDS

California Association of Public Health Nurses
3701 Branch Center Road
Sacramento, California 95827
Tele: 916-366-2345

Bereavement Network Resources of Sacramento
P.O. Box 660365
Sacramento, California , 95866
Tele: 916-363-3092

Valley-Sierra Chapter
The SIDS Alliance
564 La Sierra Drive, Box 78
Sacramento, California 95864
Tele: 916-368-SIDS

Law Enforcement Chaplaincy Sacramento
1023 H Street, Suite # B
Sacramento, Ca 95814
Tele: 916-446-5716

References Resources

Bereavement Network, Resources of Sacramento

Commonly asked Questions about Sudden Infant Death Syndrome, A

Doctor's response, Bruce Beckwith, M.D.

Facts About S.I.D.S., National S.I.D.S. Foundation

Facts About S.I.D.S. For Police Officers, National S.I.D.S. Foundation

Archer, D.N. (1988), "Sorrow Has Many Faces", Nursing 88, May issue, pages 43-44.

Berman, AB. (1979), "The Sudden Infant Death Syndrome- What Can I Do", Medical Times, April

Burrus, W.M. (UNK), "The Riddle Of Crib Death"

Carson, S.H. & Duncan, J.A. (1985), "The Important Work Of grieving", Special care, September, pages 5-7

Counseling Team, "Emotional Impact on First Responders and Emergency Personnel in a SIDS Incident".

De Frain - Taylor- Ernst, " Coping With Sudden Infant Death" Epiro, P.D. (edit) (1984), "When Sudden Infant Death Strikes".

Keens, T.G., MD. (1987), "Public Health Grand Rounds Presents Sudden Infant Death Syndrome", State Of California

Korth, S.K. (1988), "Behavior Issues: Unexpected Pediatric Deaths in the Emergency Department: Supporting The Family." Journal of Emergency Nursing, 14:5, pages 302-305

Krous, H.F., MD (1988), "Pathological Considerations Of Sudden Infant Death Syndrome", Pediatrician, 15: pages 231-239

Guntherroth, R.G., MD (1982), "Crib Death- Sudden Infant Death Syndrome"

Thomas, D.O., (1986), "Thoughts On Pediatric Arrest." Journal of Emergency Nursing, 12: pages 406-408.

Wanz~t~id, J. (unk), "What To Say And What Not To Say To The Sudden Infant Death Syndrome Parent."

Back to Chapter Six Topic Index

Brian was pale and out of breath as he ran into the private lounge where his parents and I were waiting for him. The grief on his parents' faces told him what he least wanted to hear. I reached out to grab him as he fell into a nearby chair; his body shook with retching sobs.

Back to Chapter Six Topic Index

A recently deceased person can donate either tissue or organs, sometimes both. The two types of donation have important differences.

Back to Chapter Six Topic Index

In the course of performing clerical duties in a hospital setting, you may be requested to offer spiritual counsel to families who are considering donation of the organs of a loved one. This is a sensitive role for a counselor, whether you have had one or one hundred experiences with such a call.