If your baby has died of SIDS…
No matter how deep your grief and how great your pain, remember you are not alone. The SIDS Network and our Affiliates are here to help you through this difficult time, just
as we have been helped by others who have traveled this road before us.
It is very important that all those touched by a SIDS death understand that SIDS has no specific symptoms, that SIDS occurs in the best of families and to the most capable,
careful and loving parents. Even if the baby had recently shown symptoms of a cold and had been taken to a doctor, there were no signs leading anyone to suspect the baby
would die. No one can tell ahead of time whether a baby will die of SIDS, and no one can stop SIDS from happening.
Because SIDS occurs unexpectedly and usually at home, nearly every parent feels in some way responsible for the baby’s death until the facts are explained. Often one
parent blames the other, or relatives blame one or both of the parents. Families sometimes blame a childcare provider or the doctor who told them the baby was healthy a
short time before the death.
Even after receiving accurate information about SIDS, some family members find it difficult to accept these facts. They may continue to search for answers or to blame
themselves or others. Articles and reports about SIDS often appear in the news media. Periodically such reports imply that “the cause” has been discovered. It is important to
restate that SIDS continues to be an unsolved problem. Even with current scientific knowledge, SIDS victims cannot be identified beforehand. Nothing you did caused the baby’
s death. Nothing you could have done would have prevented it.
Did the Baby Suffer?
SIDS is considered to be an almost instantaneous event. There may be some movement during the last few seconds of life, accounting for the crumpled covers or unusual
positions in which babies are found. Babies do not cry out and often show no sign of having been disturbed in their sleep. Parents who have witnessed their baby’s death
have reported that they appeared to die very peacefully in their sleep, that they appeared to simply to stop breathing.
The Grieving Process
Parents Grief
Most parents who experience the death of a child describe the pain that follows as the most intense they have ever experienced. Many parents wonder if they will be able to
tolerate the pain, to survive it, and to be able to feel life has meaning again. The intense pain SIDS parents experience may be eased somewhat if they know what has helped
other families overcome a similar grief.
Emotions that may be experienced include sadness, guilt, anger, and fear. Sadness is a normal emotion felt as a result of your loss. Parents may blame themselves for
something they did or neglected to do. “If only” becomes a familiar phrase. Parents may feel angry at themselves, their spouse, the childcare provider, the physician, or their
baby for having died. Parents might find themselves angry at God, and religious beliefs may be questioned. Many parents experience an overall sense of fear that something
else horrible is going to happen. Grieving parents often fear they are “going crazy.” These are all normal reactions.
After the initial shock and numbness of the first few days begin to wear off, parents find they are left with prolonged depression. There are “ups-and-downs” that can be
brought on by giveaways of baby products; thoughtless or innocent remarks from persons who do not understand SIDS; or by the parents, remembering it is the same day of
the week or date the baby died. At the low points it is often very helpful for them to talk to another SIDS parent. For some families support may be obtained from friends or
relatives, the clergy, physicians, counselors or other health professionals who have helped others in similar situations.
SIDS parents find it difficult to concentrate for any length of time, making it hard to read, write or make decisions. Some people experience sensations of dizziness or pressure
in the head. These feelings are common in grief and do not indicate the person is losing mental balance.
Those in grief often experience muscular problems or other physical symptoms centering around the heart or stomach. Often they have no appetite, and they eat only
because they know they must. They feel “tied in knots” inside. Mothers nearly always say their arms “ache” to hold the baby. Some suggestions to help breast feeding
mothers are available from the SIDS Alliance.
SIDS parents rely heavily on family and friends, but at the same time they may resent the help and even feel guilty about their feelings. The situation is made even more
difficult when the community around them does not understand SIDS. Friends or relatives trying to help seem to say the wrong things or appear not to understand.
Grief Reactions of Parents May Be Different
Mothers and fathers express their grief in different ways. This fact is not always understood. For instance, mothers generally need to “talk out” their grief, while fathers tend to
suffer in silence. Parents working outside the home are diverted by their work, while parents working as homemakers are surrounded by constant reminders. Fathers may find
it more difficult to ask for help and support from others and may seek diversions through their work; they may even take on extra work to escape “thinking about it all the time”.
Often the loss of the baby is the first grief situation either parent has experienced. Grief is so intense they find themselves struggling for ways to relate to each other as well
as to their friends and relatives. In order to prevent misunderstanding, most families find it helpful to maintain an atmosphere in which their feelings can be discussed openly,
even though it is difficult.
Coping With Birthdays, Anniversaries and Holidays
In the beginning, the day of the week and the hour your baby died will be the most difficult times. You may even notice you measure time in those periods. After awhile, the
date of death in each month will have significance. Later it will stretch out to other dates, such as your baby’s birthday or the anniversary of your baby’s death. Holidays and
other family celebrations may also be painful reminders to you about your baby who is gone. Sometimes the anticipation of these events is worse than the actual day.
Unfortunately, it’s hard for many of us to predict how we might feel.
What’s most important, and sometimes most difficult, is to decide for yourself what you want to happen on those days. Special days are often family-oriented, focusing on
togetherness, plans for the future and remembrances of the past. These can be painful; yet at other times, you may find this togetherness acceptable and even comforting.
You may find consolation in long-held family holiday traditions, you may want to do everything different, or you may decide to “get away from it all” this year. Let others know
your needs, limits and feelings. Don’t be afraid to ask for help and support. The SIDS Alliance can provide you with suggestions of how other families have commemorated
special days.
The Journey of Living On
It has been a long journey of recovery, and I thank God for the little girl I’ll never raise but who has raised me. Remember, we are entitled to survive this baffling and incredible
experience…We, as SIDS parents, are changed forever. Sharing our experience and supporting each other are ways to survive after SIDS. We are not going to forget about
our babies, and we are always going to hope that the missing piece of the puzzle of SIDS will soon be found.
Excerpted from “We Bring Her Flowers”
By Sharon A. Dunn
Mother of Jahna Christine Dunn (4/7/78-8/24/78)
Even though you want to believe you will recover quickly and completely from the death of your child, that is rarely the case. It is a journey that takes time and much work. As
time passes, the difficult days become less frequent and the pain less intense. There is no magic date, such as a one or five year anniversary, when you will feel instantly
healed. Some of the pain might always be with you, as will the memory of your baby. Milestone events of other children, family and friends (such as 16th birthdays,
graduations, weddings, etc.) may trigger emotions and reopen old wounds. Healing, gaining perspective, finding hope and living on have different meanings for everyone.
Though each person must heal at his or her own speed and in his or her own way, remember that others share your sorrow, know your pain, have lived through this, and are
here to help.
Another Baby…Maybe?
Maybe you are one of the many people trying for another baby soon after a SIDS death. It’s natural, you want to fill your empty arms. Yet you may feel frightened that SIDS
will happen again. You will need to figure out how long to wait and what seems right for you. For many parents, the thought of having another baby brings comfort. Others
comment they feel they are betraying their baby who has died. The “right” time to embark on this will vary depending on your individual circumstances. Trust yourself about
the timing.
When an infant dies, well-intentioned people generally try to persuade parents that having another baby as soon as possible is the only answer to accepting the death. If you
had infertility problems or other losses it may seem especially cruel. Rather strong attempts may sometimes be made to convince you that healing can only be accomplished
this way. But “healing” is actually nothing more than incorporating an event into your life in a way that enables you to live with it in an appropriate fashion. Doing that takes
time. You cannot necessarily speed up the process of healing by having or not having another baby.
If you decide not to have another baby and your decision is based upon your own reasons, be secure with the fact this decision is right for you. If you decide not to have
another baby, but your decision is based more on fear than on practical consideration, do not hesitate to seek some counseling. You will not be the first or the last person to
experience this feeling.
If you are expecting a baby, you will probably be a little nervous and excited as well as afraid. It is hard to be patient. It’s also unfair to have to wait and go through this all
again. The pregnancy can seem to last forever, and it may be hard to believe it won’t happen again. Building a good support system can really help. Talk with your doctor or
another health professional; you can also contact the SIDS Alliance. Speaking with other SIDS parents who have had subsequent children may help. Search within your group
of relatives and friends for people who will listen to your fears, not give you lots of unsolicited advice. Reviewing the facts about SIDS and reducing the risks of SIDS may also
be reassuring.
For lack of a better term, your next child has been called the “subsequent child.” This new child is indeed a very special one to you and to everyone else. The birth of a
subsequent child can be an overwhelming emotional experience. When you see and hold your new baby for the first time, you may find that difficult memories come flooding
back and intermingle with the pleasure you are feeling. The moment can be a mixture of great joy and intense pain.
Will you spend twenty-four hours a day by the crib? The answer is no. Even if you try, eventually you will get tired, which isn’t good for you or your baby. This is when you
learn to trust — in living, in yourself and your values. You will probably check on your sleeping baby more frequently than you did your other children. Parents of subsequent
children are the first to admit that in the past they used to check their babies to see if they were covered, whereas now they check breaths and heartbeats. Many babies are
quiet sleepers; a gentle hand on the tummy can reassure you. Babies do pause in their breathing periodically and sometimes pant for a breath or two. If you remember this,
you will spare yourself some moments of uneasiness.
The most uncomfortable period will be the point when your subsequent child nears the age of the child who died. It is one of those milestones that has to be reached and
passed. Once it is, most parents report their moments of uneasiness start to decrease. Most of all, be assured you are not the only person to experience discomfort or panic.
Nearly everyone does. You can only do your best in finding ways to handle it. If you find you are feeling uneasy most of the time, be sure to consult your doctor, other health
professional or the SIDS Alliance for some additional help.
The birth of your newborn represents hope and a promise of the continuity of life. Joy and sorrow are memories in your life that enable you to know the importance of hope.
Many parents have weathered the crisis, panic, and great joy of their subsequent child’s infancy. They acknowledge, while it was not always easy and they had to work at
handling their emotions, their effort was rewarded by one of the most wonderful periods in their lives.
Children’s Reactions To Death
Brothers and sisters will also be affected deeply by the death of the baby. Smaller children who are too young for explanations need only to be shown love and affection by
their parents. They may have some very frightening thoughts they cannot express. (Did I cause the baby to die? Will I die too? Will Mommy and Daddy die? Am I still a big
sister or brother? Who will take care of me now?) They may cling to their parents and do other things to get attention. It is most important for them to know they are loved and
secure.
Older brothers and sisters experience grief reactions which may vary depending on their ages and past experiences. Sometimes they feel guilty because they mistakenly think
they may have caused the baby’s death. They may be very sad or may appear not to have any feelings.
Children should be told as much about the facts as they are able to understand. All older family members should be open to expressing their thoughts and feelings. This
openness will enable the children to express how they feel and to ask questions about the death. It is best not to say, “The baby went away” or “The baby is sleeping in
peace.” It is important to explain that SIDS occurs only in very little babies and not in older children or adults.
Many youngsters have been sources of strength for their families. They have written poetry and often exhibit simple, unshakable faith about the pattern of life and death.
Some children, on the other hand, because of circumstances of age or emotional makeup, have felt terrible insecurity after a sibling’s death. This loss of security has
manifested itself in nightmares, bet wetting, difficulty in school and other disturbances. Any such problems should be discussed with the child’s doctor. Other SIDS parents can
also offer practical tips and reassurance.
Lines of communication about the death should be kept open for years since children’s questions and ability to understand change as they develop. They will need more
complete information over time.
For more information please contact:
The SIDS Network of Kansas, Inc.
1148 S. Hillside, Ste. 10
Wichita, KS 67211
(316) 682-1301
Toll free: 1-866-399-7437
No matter how deep your grief and how great your pain, remember you are not alone. The SIDS Network and our Affiliates are here to help you through this difficult time, just
as we have been helped by others who have traveled this road before us.
It is very important that all those touched by a SIDS death understand that SIDS has no specific symptoms, that SIDS occurs in the best of families and to the most capable,
careful and loving parents. Even if the baby had recently shown symptoms of a cold and had been taken to a doctor, there were no signs leading anyone to suspect the baby
would die. No one can tell ahead of time whether a baby will die of SIDS, and no one can stop SIDS from happening.
Because SIDS occurs unexpectedly and usually at home, nearly every parent feels in some way responsible for the baby’s death until the facts are explained. Often one
parent blames the other, or relatives blame one or both of the parents. Families sometimes blame a childcare provider or the doctor who told them the baby was healthy a
short time before the death.
Even after receiving accurate information about SIDS, some family members find it difficult to accept these facts. They may continue to search for answers or to blame
themselves or others. Articles and reports about SIDS often appear in the news media. Periodically such reports imply that “the cause” has been discovered. It is important to
restate that SIDS continues to be an unsolved problem. Even with current scientific knowledge, SIDS victims cannot be identified beforehand. Nothing you did caused the baby’
s death. Nothing you could have done would have prevented it.
Did the Baby Suffer?
SIDS is considered to be an almost instantaneous event. There may be some movement during the last few seconds of life, accounting for the crumpled covers or unusual
positions in which babies are found. Babies do not cry out and often show no sign of having been disturbed in their sleep. Parents who have witnessed their baby’s death
have reported that they appeared to die very peacefully in their sleep, that they appeared to simply to stop breathing.
The Grieving Process
Parents Grief
Most parents who experience the death of a child describe the pain that follows as the most intense they have ever experienced. Many parents wonder if they will be able to
tolerate the pain, to survive it, and to be able to feel life has meaning again. The intense pain SIDS parents experience may be eased somewhat if they know what has helped
other families overcome a similar grief.
Emotions that may be experienced include sadness, guilt, anger, and fear. Sadness is a normal emotion felt as a result of your loss. Parents may blame themselves for
something they did or neglected to do. “If only” becomes a familiar phrase. Parents may feel angry at themselves, their spouse, the childcare provider, the physician, or their
baby for having died. Parents might find themselves angry at God, and religious beliefs may be questioned. Many parents experience an overall sense of fear that something
else horrible is going to happen. Grieving parents often fear they are “going crazy.” These are all normal reactions.
After the initial shock and numbness of the first few days begin to wear off, parents find they are left with prolonged depression. There are “ups-and-downs” that can be
brought on by giveaways of baby products; thoughtless or innocent remarks from persons who do not understand SIDS; or by the parents, remembering it is the same day of
the week or date the baby died. At the low points it is often very helpful for them to talk to another SIDS parent. For some families support may be obtained from friends or
relatives, the clergy, physicians, counselors or other health professionals who have helped others in similar situations.
SIDS parents find it difficult to concentrate for any length of time, making it hard to read, write or make decisions. Some people experience sensations of dizziness or pressure
in the head. These feelings are common in grief and do not indicate the person is losing mental balance.
Those in grief often experience muscular problems or other physical symptoms centering around the heart or stomach. Often they have no appetite, and they eat only
because they know they must. They feel “tied in knots” inside. Mothers nearly always say their arms “ache” to hold the baby. Some suggestions to help breast feeding
mothers are available from the SIDS Alliance.
SIDS parents rely heavily on family and friends, but at the same time they may resent the help and even feel guilty about their feelings. The situation is made even more
difficult when the community around them does not understand SIDS. Friends or relatives trying to help seem to say the wrong things or appear not to understand.
Grief Reactions of Parents May Be Different
Mothers and fathers express their grief in different ways. This fact is not always understood. For instance, mothers generally need to “talk out” their grief, while fathers tend to
suffer in silence. Parents working outside the home are diverted by their work, while parents working as homemakers are surrounded by constant reminders. Fathers may find
it more difficult to ask for help and support from others and may seek diversions through their work; they may even take on extra work to escape “thinking about it all the time”.
Often the loss of the baby is the first grief situation either parent has experienced. Grief is so intense they find themselves struggling for ways to relate to each other as well
as to their friends and relatives. In order to prevent misunderstanding, most families find it helpful to maintain an atmosphere in which their feelings can be discussed openly,
even though it is difficult.
Coping With Birthdays, Anniversaries and Holidays
In the beginning, the day of the week and the hour your baby died will be the most difficult times. You may even notice you measure time in those periods. After awhile, the
date of death in each month will have significance. Later it will stretch out to other dates, such as your baby’s birthday or the anniversary of your baby’s death. Holidays and
other family celebrations may also be painful reminders to you about your baby who is gone. Sometimes the anticipation of these events is worse than the actual day.
Unfortunately, it’s hard for many of us to predict how we might feel.
What’s most important, and sometimes most difficult, is to decide for yourself what you want to happen on those days. Special days are often family-oriented, focusing on
togetherness, plans for the future and remembrances of the past. These can be painful; yet at other times, you may find this togetherness acceptable and even comforting.
You may find consolation in long-held family holiday traditions, you may want to do everything different, or you may decide to “get away from it all” this year. Let others know
your needs, limits and feelings. Don’t be afraid to ask for help and support. The SIDS Alliance can provide you with suggestions of how other families have commemorated
special days.
The Journey of Living On
It has been a long journey of recovery, and I thank God for the little girl I’ll never raise but who has raised me. Remember, we are entitled to survive this baffling and incredible
experience…We, as SIDS parents, are changed forever. Sharing our experience and supporting each other are ways to survive after SIDS. We are not going to forget about
our babies, and we are always going to hope that the missing piece of the puzzle of SIDS will soon be found.
Excerpted from “We Bring Her Flowers”
By Sharon A. Dunn
Mother of Jahna Christine Dunn (4/7/78-8/24/78)
Even though you want to believe you will recover quickly and completely from the death of your child, that is rarely the case. It is a journey that takes time and much work. As
time passes, the difficult days become less frequent and the pain less intense. There is no magic date, such as a one or five year anniversary, when you will feel instantly
healed. Some of the pain might always be with you, as will the memory of your baby. Milestone events of other children, family and friends (such as 16th birthdays,
graduations, weddings, etc.) may trigger emotions and reopen old wounds. Healing, gaining perspective, finding hope and living on have different meanings for everyone.
Though each person must heal at his or her own speed and in his or her own way, remember that others share your sorrow, know your pain, have lived through this, and are
here to help.
Another Baby…Maybe?
Maybe you are one of the many people trying for another baby soon after a SIDS death. It’s natural, you want to fill your empty arms. Yet you may feel frightened that SIDS
will happen again. You will need to figure out how long to wait and what seems right for you. For many parents, the thought of having another baby brings comfort. Others
comment they feel they are betraying their baby who has died. The “right” time to embark on this will vary depending on your individual circumstances. Trust yourself about
the timing.
When an infant dies, well-intentioned people generally try to persuade parents that having another baby as soon as possible is the only answer to accepting the death. If you
had infertility problems or other losses it may seem especially cruel. Rather strong attempts may sometimes be made to convince you that healing can only be accomplished
this way. But “healing” is actually nothing more than incorporating an event into your life in a way that enables you to live with it in an appropriate fashion. Doing that takes
time. You cannot necessarily speed up the process of healing by having or not having another baby.
If you decide not to have another baby and your decision is based upon your own reasons, be secure with the fact this decision is right for you. If you decide not to have
another baby, but your decision is based more on fear than on practical consideration, do not hesitate to seek some counseling. You will not be the first or the last person to
experience this feeling.
If you are expecting a baby, you will probably be a little nervous and excited as well as afraid. It is hard to be patient. It’s also unfair to have to wait and go through this all
again. The pregnancy can seem to last forever, and it may be hard to believe it won’t happen again. Building a good support system can really help. Talk with your doctor or
another health professional; you can also contact the SIDS Alliance. Speaking with other SIDS parents who have had subsequent children may help. Search within your group
of relatives and friends for people who will listen to your fears, not give you lots of unsolicited advice. Reviewing the facts about SIDS and reducing the risks of SIDS may also
be reassuring.
For lack of a better term, your next child has been called the “subsequent child.” This new child is indeed a very special one to you and to everyone else. The birth of a
subsequent child can be an overwhelming emotional experience. When you see and hold your new baby for the first time, you may find that difficult memories come flooding
back and intermingle with the pleasure you are feeling. The moment can be a mixture of great joy and intense pain.
Will you spend twenty-four hours a day by the crib? The answer is no. Even if you try, eventually you will get tired, which isn’t good for you or your baby. This is when you
learn to trust — in living, in yourself and your values. You will probably check on your sleeping baby more frequently than you did your other children. Parents of subsequent
children are the first to admit that in the past they used to check their babies to see if they were covered, whereas now they check breaths and heartbeats. Many babies are
quiet sleepers; a gentle hand on the tummy can reassure you. Babies do pause in their breathing periodically and sometimes pant for a breath or two. If you remember this,
you will spare yourself some moments of uneasiness.
The most uncomfortable period will be the point when your subsequent child nears the age of the child who died. It is one of those milestones that has to be reached and
passed. Once it is, most parents report their moments of uneasiness start to decrease. Most of all, be assured you are not the only person to experience discomfort or panic.
Nearly everyone does. You can only do your best in finding ways to handle it. If you find you are feeling uneasy most of the time, be sure to consult your doctor, other health
professional or the SIDS Alliance for some additional help.
The birth of your newborn represents hope and a promise of the continuity of life. Joy and sorrow are memories in your life that enable you to know the importance of hope.
Many parents have weathered the crisis, panic, and great joy of their subsequent child’s infancy. They acknowledge, while it was not always easy and they had to work at
handling their emotions, their effort was rewarded by one of the most wonderful periods in their lives.
Children’s Reactions To Death
Brothers and sisters will also be affected deeply by the death of the baby. Smaller children who are too young for explanations need only to be shown love and affection by
their parents. They may have some very frightening thoughts they cannot express. (Did I cause the baby to die? Will I die too? Will Mommy and Daddy die? Am I still a big
sister or brother? Who will take care of me now?) They may cling to their parents and do other things to get attention. It is most important for them to know they are loved and
secure.
Older brothers and sisters experience grief reactions which may vary depending on their ages and past experiences. Sometimes they feel guilty because they mistakenly think
they may have caused the baby’s death. They may be very sad or may appear not to have any feelings.
Children should be told as much about the facts as they are able to understand. All older family members should be open to expressing their thoughts and feelings. This
openness will enable the children to express how they feel and to ask questions about the death. It is best not to say, “The baby went away” or “The baby is sleeping in
peace.” It is important to explain that SIDS occurs only in very little babies and not in older children or adults.
Many youngsters have been sources of strength for their families. They have written poetry and often exhibit simple, unshakable faith about the pattern of life and death.
Some children, on the other hand, because of circumstances of age or emotional makeup, have felt terrible insecurity after a sibling’s death. This loss of security has
manifested itself in nightmares, bet wetting, difficulty in school and other disturbances. Any such problems should be discussed with the child’s doctor. Other SIDS parents can
also offer practical tips and reassurance.
Lines of communication about the death should be kept open for years since children’s questions and ability to understand change as they develop. They will need more
complete information over time.
For more information please contact:
The SIDS Network of Kansas, Inc.
1148 S. Hillside, Ste. 10
Wichita, KS 67211
(316) 682-1301
Toll free: 1-866-399-7437
Grief Support for Parents
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