Sudden Infant Death Syndrome Siblings and Grief

INTRODUCTION

Of all of the problems that parents must cope with following the death of an infant, perhaps one of the most difficult is how they should relate to the other children in the family. The task is all the more difficult because they themselves are in the midst of grieving. Because of this, they frequently need to rely on others for guidance.

Dr. Norman Lewak has described in this pamphlet how other children in the family might best be helped following the sudden, unexpected death of a brother or sister to SIDS. He has drawn on what is scientifically known about child development and children's concepts of death and the manner in which they grieve. More significantly, Dr. Lewak relates this information to the people who can best help children during this difficult time, their parents and the individuals who guide their parents.

From his own professional experiences Dr. Lewak relates responses to the questions most frequently asked by parents who must deal with this situation.

Stanford B. Friedman M.D.      Carolyn Szybist R.N.

WHAT DO WE TELL OUR CHILDREN ABOUT THE BABY'S DEATH?

The best thing to tell your children in all situations is the truth. Use words your children can understand. Children, especially younger ones, are very literal and believe every word means exactly what it says. Therefore, if you say that the baby "went away", your child might be frightened of going on trips. If you say that the baby "went to sleep and will never wake up", your child may be afraid to go to sleep.

I UNDERSTAND THAT, BUT EXACTLY WHAT DO I TELL MY CHILD?

Again, the truth. The baby died of an entity called SIDS. We do not know why infants die of SIDS, but we do know that it only happens to babies. Thus, you can truthfully reassure your child that he will not die of SIDS.

If you child is over 4 or 5, you should go on to tell him what you have learned about SIDS-that it is not preventable, that nothing you or your child did caused it to happen.

SHOULD WE REALLY USE THE WORD "DIE"?

Death is a fact of life-all children learn about it. Different cultures handle the topic of death in different ways. Our culture tends to treat death as a taboo-a subject not to be talked about, especially to children. Not talking about it only makes it more difficult for your children. It may cause them to imagine all sorts of horrible things.

For some people, the word "die" is difficult and they substitute another word or phrase for it. As long as that word or phrase means only "to die" and cannot mean anything else (an example is "passed away"), it would probably do no harm. However, since "death" and "die" are words that all children will hear and use, it is better to use them if you can.

IS IT A PROBLEM IF I TELL MY CHILD THAT THE BABY WENT TO HEAVEN?

Religious questions are quite difficult to answer. Those of you who are not religious would not use such terms in your discussion with your children. However, you might want to think about what to say if your child hears about God and heaven from other people and asks you about these topics.

For those of you who are religious, your religion can be a source of strength in this difficult time. However, it is important to understand that children, especially younger ones, can be confused or frightened by some religious concepts. You might tell your child that "the baby died" and then, if you wish, discuss your religious ideas about death, using words and concepts that your child can understand. Perhaps your clergyman can help.

SHOULD WE SEND OUR CHILD TO STAY WITH RELATIVES?

Since all family members have sustained a loss, even the youngest child needs to take part in the mourning-the initial period after the death when the family is saying goodbye to the infant and gradually believing that the baby is really dead. Saying goodbye is a family affair and needs to be done together if at all possible.

Rather than send your child to relatives, it is better to have people you love and trust come into your home to take care of your child. If this is not possible, have your child spend periods of time away from home with friends or relatives, but come back home each day to be with you. Sending your child away might make her think that you are hiding something from her, and it would worsen any guilt feelings she might have.

OUR BABY DIED LAST YEAR AND WE SENT OUR SON TO HIS GRANDPARENTS FOR THE FIRST MONTH. HE NEVER ASKED ABOUT THE BABY, BUT HE SEEMS NORMAL. WHAT SHOULD WE DO NOW?

Since nothing is absolutely true for every child, he may do perfectly well without your doing anything more. However, it is known that some things tend to be true for most people. For this reason, you might want to see if your son needs to talk about the baby. You can bring up the subject of the baby and her death every once in a while, especially at times that are appropriate, such as discussion about family or babies.

If your son needs to express his grief, this will let him do so. However, if his grief has been bottled up for so long, it may be difficult for him to let it out. Thus he may say that he doesn't want to hear about it. Despite this, if you get the feeling that he really does want to hear about it or he starts getting "emotional" you should gently continue to discuss SIDS and the baby's death. If it seems necessary, you can go into the details of how you felt during the first few days and during the funeral. Since your child missed the funeral, you might want to visit the gravesite as "proof' that the baby is dead. (See next question.)

SHOULD OUR CHILDREN GO TO THE FUNERAL?

This is something only you can decide. Most children need to be involved in the mourning process in order to have an emotionally successful grief reaction. Exactly how much of the mourning ritual your child should participate in is up to you.

If you have a wake or memorial service and your children are there, this may be enough. However, for most people in this country, the only formal mourning ceremony is the funeral. For some children, going to the funeral may be too frightening. Having young children present may make some of the adults nervous.

If you have older children, the question of going to the funeral should be discussed with them. The suggestion of most experts is that children of all ages should go to the funeral if this fits the religious or moral beliefs of the family.

SHOULD OUR CHILDREN VISIT THE GRAVE?

The answer to this question is the same as that to the previous question about going to the funeral.

WE TOLD OUR 3-YEAR OLD GIRL THAT THE BABY DIED, BUT SHE TALKS AS IF HER BROTHER IS STILL WITH US. WHY IS THAT?

Children under 5 or 6 years of age relate death to going away but do not fully understand that the person cannot come back. The concept that death is temporary is reinforced daily by the cartoon characters on television who are constantly being blown up only to reappear.

Since you have introduced the topic of death in its true meaning, your daughter will gradually understand it. What is most important is that you have not given her any false information that she will have to unlearn in the future. As she gets older, you can discuss the subject of the baby's death at times when it seems appropriate.

WHEN I TOLD MY 7-YEAR OLD, HE SIMPLY WENT OUT TO PLAY BALL. IS THAT NORMAL?

Children between 6 and 8 years of age understand that people die, but they usually do not believe that it can happen to them. They view death as something outside of themselves, something that has nothing to do with them. For this reason, your son may not have emotionally accepted the fact that the baby has died. It may take a few days, a few months, or in rare cases a few years for the reality of the death to "sink in". Your continuing openness about the death will help him with his grief when it does show itself.

It is also possible that he may be one who will never show grief openly. Many people have difficulty grieving in front of others. They can benefit by seeing others grieve in their own ways.

Another possibility is that he may be too frightened to talk or think about the death. For this reason, it might be helpful to discuss the fact that some children are frightened by the death of their brother or sister. Knowing that you understand will be quite helpful to the child who is frightened, even if he doesn't want to talk about it.

MY CHILD HAS BEEN HANGING ON TO ME SINCE THE BABY DIED LAST MONTH. DOES THIS MEAN SOMETHING IS WRONG?

This is normal for a grieving child. He has undergone a loss and is frightened that he might lose you also.

MY CHILDREN SEEM HEALTHY, BUT I WORRY ABOUT THEM ALL THE TIME. WHAT SHOULD I DO?

It is normal for you to worry about your surviving children. See your children's doctor for a "checkup" so that he can reassure you that they are healthy. The visit will also give you a chance to discuss with the doctor whether your children's grief reactions are normal or not.

IS THERE SUCH A THING AS A NORMAL GRIEF REACTION?

All of us have differences and similarities. Although some of what your children are experiencing will depend on what kind of persons they are, some generalizations can be made.

There are many ways to describe what goes on during grief. Dr. Michael Rothenberg, Professor of Child Psychiatry, University of Washington, describes four emotions that we go through during times of crisis: Fear, Anger, Guilt and Sadness.

It is important to remember that everyone is experiencing these four emotions­you, your children, your family, your friends, your doctor, the ambulance attendants, the policeman, everyone who is touched by the baby's death.

The first stop in looking at your child's emotional situation is to look at yourself and decide how you are reacting to your own Fear, Anger, Guilt, and Sadness. This is not to say that you have to immediately conquer these emotions-only that you should be aware of them so that you can deal with the same emotions in your child.

FEAR

The predominant reaction to death is fear-fear of death. Since this was the death of a child, it is natural that other children in the family will be afraid that it might happen to them. Even the very young child will be afraid because he or she will sense your fear. Reassurance that SIDS happens only to babies will help.

This fear of death might continue to express itself in you and your child as a fear of sickness. You will probably be calling or seeing your doctor frequently about the slightest of symptoms in your children. Do not feel embarrassed by this constant need for reassurance. Most doctors will understand your situation. As time goes by the need for reassurance will lessen. As you become more comfortable about sickness, so will your children.

Along with the fear of death in general, your child may fear that he or she will die as a punishment for misdeeds. For this reason, it is not a good idea to threaten your child with potential death, such as "the boogie man will get you" or "if you don't eat your peas, you will get sick."

Another fear your child may have is the fear of desertion. Death may be viewed as the deceased one leaving the survivors. Your child may, for this reason, be afraid that you will also leave and never come back. Letting the child be with you all the time is not the best treatment for this fear. It is better to go away for short periods and then return, proving to your child that when you go away, you do come back. These periods can then gradually be lengthened.

ANGER

Anger is a very obvious and very understandable emotion in a grieving person. Some older children and adults can express their anger at whatever caused the baby to die (although this is difficult with SIDS), while others tend to get mad at everything and everybody in general. Younger children usually show their anger in a similar way by what is called "acting out" (breaking things and fighting). This "letting it out" is good for children and adults as long as it is done in a safe manner. You should tell your child, by your words and actions, that you understand his anger and that it is all right to be angry as long as no one gets hurt.

It is strange but true that the grieving person is often angry at the one who died and at himself. Anger directed toward the baby occurs because it is the baby who "caused all the grief' by dying. This may not make any sense, but the grieving mind doesn't always function rationally. This "crazy" thought is a common and normal one experienced by many whose loved ones die.

Anger at oneself is a result of the guilt one feels for being angry at the person who died and the guilt of being a survivor: "How come he died and I didn't?"

GUILT

Guilt is a normal feeling that arises when a person feels that he has thought or done something wrong. In a SIDS death, the guilt felt in connection with being a survivor is often compounded by the guilt of having "wished" the baby's death.

Even the most loving parents find that there are times when a new baby can exasperate them to the point where they may find themselves wondering what it would be like if the baby had not been born. This wish that the baby hadn't been born is felt even more strongly by older children in families with new babies.

Even if he or she doesn't know it, your child has had such thoughts. For all children, and especially for the 2 to 5 year old, it is extremely important for you to tell your child that you know about his guilt feelings by saying: "I know that at times you got mad at the baby and wished that he would go away forever, but your wishing it did not make the baby die."

For the older child or adult, the guilt can be difficult to "disprove". Since it is not known what causes SIDS, the parents and family can feel guilt over the belief that they "caused" the death. It is for this reason that it is stressed to you that SIDS is not predictable and not preventable.

SADNESS

Sadness is a normal emotion felt by children and adults as a result of the real or imagined loss of an important person or object. Even the very young child will feel the loss sufficiently to experience real sadness.

The sadness is expressed by the child's showing a decrease in activity-being "too quiet". This is normal and does not mean that therapy is necessary. Excessive sadness may lead to serious depression and may require therapy.

HOW DO I KNOW WHAT IS TOO MUCH SADNESS, FEAR, ANGER, OR GUILT?

Time is an important factor. What might be normal in the first month or two after the infant's death may not be normal a few months later.

Within four to six months after the baby's death, your child should be starting to resume normal daily activities. These activities include eating, sleeping, playing alone or with friends, and going to school.

Eating and sleeping may not return completely to normal for many months, but if your child is losing weight or having constant nightmares, therapy may be necessary. Not being interested in playing favorite games or seeing friends or doing schoolwork is also normal at first, but these changes should gradually pass.

Talking to others who have observed your child such as teachers, friends, doctors, ministers, public health nurses, or other SIDS parents, might be helpful in deciding if your child's grief reaction is normal or abnormal.

MY FRIEND TOLD ME TO HOLD MY SURVIVING CHILD MORE, THAT IT WILL HELP MAKE UP FOR THE BABY THAT I CAN NO LONGER HOLD. IS THAT CORRECT?

It is natural to want_ to hold your remaining child all the time. However, there is such a thing as holding too much. You cannot replace your lost child. Trying to do so is not good for you or your surviving child.

Some people go the other way and tend to ignore their surviving children during the grief period. Wanting to be alone during the grief is also normal. However, problems can arise from too much ignoring as well as too much holding.

The best course is to try to pay attention to your children's needs for comfort and to try to help them through their natural grief process.

ALL THE EXPERTS TELL US THAT WE SHOULD ACT AS IF NOTHING HAS HAPPENED; DO THEY KNOW WHAT THEY ARE TALKING ABOUT?

Of course something has happened, something devastating. This cannot be ignored. But the world has not ended and your other children need the stability that comes from familiar routines in a familiar setting. Too many unnecessary changes in these routines and settings will only add to the devastation your child feels.

To summarize, treat your child as you would in all situations-be as loving and truthful and consistent as you can; try to see the situation from your child's point of view; and then do for your child whatever you feel is best for him or her.

 

 

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