Facts about Sudden Death Syndrome
The Sudden Infant Death Syndrome Foundation.
On August the 3rd 1977 a group of parents met for the first time, all of whom had lost a baby to the Sudden Infant Death Syndrome (Cot Death), They found they were not alone in their bewilderment, doubts and fears. By sharing their experiences they felt less isolated and received the comfort and understanding they all wished they had received at the time of their loss. They were then more able to cope with their loss. Experience since has shown that parents who have lost a baby to S.I.D.S. like this support and need information about S.I.D.S. early in their bereavement. A foundation was formed, with the foremost aim of assisting bereaved parents.These people are no strangers to the trauma you are feeling or have felt. They are willing to share your experiences with you and discuss any matter relating to S.I.D.S. you may wish to raise. Because they have lived through what you are experiencing now they understand what is happening to you and your family as you grieve. These parents are volunteers, ordinary men and women who have worked through their own grief and are now willing to assist you and your family through this difficult time.
FACTS ABOUT SIDS.
The Sudden Infant Death Syndrome (Cot Death) is a major cause of death in babies less than 12 months old. The babies who die seem perfectly healthy. They are usually well fed, well cared for and come from loving homes. They may be either breast or bottle fed.
There is nothing new about SIDS but the name, although it has only been recognised by the Registrar of Births, Deaths and Marriages as a definite cause of death, since 1973. Sudden deaths have been known to occur since biblical times. Until recently they were blamed on suffocation, choking, or the mother having rolled on to the child during sleep. Death due to these causes are extremely rare.
About two Western Australian babies in every thousand die of S.I.D.S. On average there are about 43 deaths per year in Western Australia attributable to S.I.D.S The pro portion of deaths due to S.I.D.S. to live births remains fairly constant, but since other major causes of child death such as diphtheria, polio, whooping cough, have been brought under control, S.I.D.S. deaths have become more prominent.
Because young babies spend most of their time in their cots, this is where most of the deaths occur. For this reason, it is often referred to as cot death’ but the association with cots is really incidental, Babies have been known to die of S.I.D.S in car seats, prams, shopping trolleys, even in their mothers’ arms.
Cause Unknown.
Nobody knows yet what causes S.l.D.S. It seems to be more frequent in autumn and winter than at other times of year, but it can strike any family, at any time.
There are no visible warning signs exhibited by babies prior to the death, in fact reports from parents and doctors indicate that they are physically sound and growing normally. Over the years a number of theories about the causes of S.I.D.S. have been investigated and a certain amount of research carried out, To date however, no final conclusions have been reached, Some of the theories have caused unnecessary distress to parents. The house dust mite, sheep skin bedding, second hand mattresses, fly spray, severe infection, vitamin deficiency in the baby or the pregnant mother — all have been blamed at some time or other, No theory has yet been confirmed. The only certainty at the moment is that nobody can be blamed. Nothing could have been done to prevent the deaths, and nobody should feel in any way responsible.
No Suffering.
Death from SIDS is almost instantaneous. There is no sign that babies suffer any pain or distress. They usually do not cry or there is no unusual sound or sign of struggle. Often they show no trace of having been disturbed in their sleep.
Sometimes, there is some movement during the last few moments of life. Blankets are displaced, or the baby found in an unusual position. Occasionally there are signs of vomiting, or some blood-stained fluid around the mouth. Sometimes, they simply go pale and die, usually while asleep. Whatever happens it seems they lose consciousness first.
SIDS is most common between two and four months but it can happen in younger babies, or any time up to two years.
On August the 3rd 1977 a group of parents met for the first time, all of whom had lost a baby to the Sudden Infant Death Syndrome (Cot Death), They found they were not alone in their bewilderment, doubts and fears. By sharing their experiences they felt less isolated and received the comfort and understanding they all wished they had received at the time of their loss. They were then more able to cope with their loss. Experience since has shown that parents who have lost a baby to S.I.D.S. like this support and need information about S.I.D.S. early in their bereavement. A foundation was formed, with the foremost aim of assisting bereaved parents.These people are no strangers to the trauma you are feeling or have felt. They are willing to share your experiences with you and discuss any matter relating to S.I.D.S. you may wish to raise. Because they have lived through what you are experiencing now they understand what is happening to you and your family as you grieve. These parents are volunteers, ordinary men and women who have worked through their own grief and are now willing to assist you and your family through this difficult time.
FACTS ABOUT SIDS.
The Sudden Infant Death Syndrome (Cot Death) is a major cause of death in babies less than 12 months old. The babies who die seem perfectly healthy. They are usually well fed, well cared for and come from loving homes. They may be either breast or bottle fed.
There is nothing new about SIDS but the name, although it has only been recognised by the Registrar of Births, Deaths and Marriages as a definite cause of death, since 1973. Sudden deaths have been known to occur since biblical times. Until recently they were blamed on suffocation, choking, or the mother having rolled on to the child during sleep. Death due to these causes are extremely rare.
About two Western Australian babies in every thousand die of S.I.D.S. On average there are about 43 deaths per year in Western Australia attributable to S.I.D.S The pro portion of deaths due to S.I.D.S. to live births remains fairly constant, but since other major causes of child death such as diphtheria, polio, whooping cough, have been brought under control, S.I.D.S. deaths have become more prominent.
Because young babies spend most of their time in their cots, this is where most of the deaths occur. For this reason, it is often referred to as cot death’ but the association with cots is really incidental, Babies have been known to die of S.I.D.S in car seats, prams, shopping trolleys, even in their mothers’ arms.
Cause Unknown.
Nobody knows yet what causes S.l.D.S. It seems to be more frequent in autumn and winter than at other times of year, but it can strike any family, at any time.
There are no visible warning signs exhibited by babies prior to the death, in fact reports from parents and doctors indicate that they are physically sound and growing normally. Over the years a number of theories about the causes of S.I.D.S. have been investigated and a certain amount of research carried out, To date however, no final conclusions have been reached, Some of the theories have caused unnecessary distress to parents. The house dust mite, sheep skin bedding, second hand mattresses, fly spray, severe infection, vitamin deficiency in the baby or the pregnant mother — all have been blamed at some time or other, No theory has yet been confirmed. The only certainty at the moment is that nobody can be blamed. Nothing could have been done to prevent the deaths, and nobody should feel in any way responsible.
No Suffering.
Death from SIDS is almost instantaneous. There is no sign that babies suffer any pain or distress. They usually do not cry or there is no unusual sound or sign of struggle. Often they show no trace of having been disturbed in their sleep.
Sometimes, there is some movement during the last few moments of life. Blankets are displaced, or the baby found in an unusual position. Occasionally there are signs of vomiting, or some blood-stained fluid around the mouth. Sometimes, they simply go pale and die, usually while asleep. Whatever happens it seems they lose consciousness first.
SIDS is most common between two and four months but it can happen in younger babies, or any time up to two years.
The Coroner’s Investigation.
It is a law of the State that any unexpected death must be reported to the coroner. This is really a safeguard for all concerned. Investigations establish that the death was due to natural causes and removes any possible suspicion of negligence.
In one or two of every ten cases of unexpected deaths in babies the autopsy may show a previously unsuspected congenital malformation, or signs of a rapid infective process. In the remaining cases no reason for death can be found and the cause is attributed to the Sudden Infant Death Syndrome.
Parents.
When a baby dies suddenly it is an almost unbelievable shock — a nightmare from which parents may feel they must soon wake up. Feelings are likely to be numb fora few days. This is likely to be followed by anger andfrus tration - ‘Why me? Why our baby?” - and profound de pression.
You, as mother will feel you have lost part of yourself, es pecially if you were breast feeding. Because the baby seemed perfectly healthy and there was no obvious reason for what happened, you wiil feel bewildered and lost, searching for a reason why it happened. Later, despite expert advice you may feel some how guilty that something you did, or didn’t do may have been respons ible. NO BODY COULD HAVE DONE ANY THING to predict or prevent the tragedy. It is especially unfair to blame anybody else — a grandparent or baby sitter who was minding the baby at the time.
These same feelings are strong in you, the father, though this is seldom appreciated. Both of you need to be able to express your grief and work through it. It is important
that you talk to each other about your lost child and about your feelings. Your greatest source of strength is each other. Grieving partners often develope strong sexual desires when comforting each other. This is very natural. Do not feel ashamed of them. Feel free to ex press your love to each other.
In time the sharp pain you experienced at the death and funeral and the gnawing pain experienced soon after will gradually soften, It is however important to realize that as with any wound, healing does take time.
People express their grief differently, and for some the wound heels sooner than others. But typically, the reaction to grief goes through these four stages - denial
(its all a dream), anger (Why us?), depression accompanied by self blame, then eventual acceptance of the situation.
Each person needs to work through these four stages in his or her own way and own time. One person can’t hurry up another by telling them to snap out of it’, or ‘stop wallowing in grief’. A great deal of marital discord can result when one partner’s reaction to grief conflicts with the other (for example one partner needing to talk it out and the other not wanting to) or when one partner comes to accept the situation then becomes impatient and sees the continuing grief of the other as a refusal to adjust, rather than as part of a natural process which time will heal.
Later On.
Following the initial shock of the death and funeral many parents either want to leave the scene of the death or (possibly on the advice of relatives) take a break and go on a holiday. Other parents of S.I.D.S. babies have done these things and you should be aware of their experi ences before you decide on one of these courses of action. You have already gone through a traumatic experience. Moving house could well add to your prob lems, especially if done on the spur of the moment. It is also very costly. Your grief is part of you and so will be there with you in your new home. You can’t leave it behind. In fact such a move could lengthen your period of bereavement.
If you decide on a holiday the very factors that normally make it enjoyable may cause you distress. You wilt be looking for something solid and familiar to help you orient yourself and put your thoughts in order. The diff
erent situation and way of life that apply on vacation may hinderthis process.
Going to visit relatives can be benificial (if they can cope with your loss) especially if you have no close family near by.
Death of the young from natural causes is not now so common so people generally don’t have the experience to help or even know how to act in the prösence of a grieving person. Because of this some relatives and close friends may be reluctant to visit. Others may delib eratly avoid you. They may feel inadequate, afraid that they may inadvertantly do or say the wrong thing and so upset you. They could well be trying to run away from the tragedy them selves. If you feel they can cope with your loss you may have to take the initiative by inviting them to visit or even visiting them your selves. They will need to be put at ease with you, so explain how you feel and how you feel they can help you. Ask them to share your loss as they cnce shared your joy when the baby was born.
Other Children.
Brothers and sisters may find it hard to understand that the baby has gone permanently. They need a clear explanation, and opportunity to air their own worries. They may feel the same thing could happen to them, or that they are in some way responsible for what happened. It is important to reassure them, and let them know they are loved, wanted and secure.
Children are always affected by a death in the family, though they do not react in the same way as adults, they may seem unconcerned, or they may act out their grief by behaving badly, by reverting to childish behaviour or bedwetting, orby having nightmares.
On the whole, children react best to straightforward ex planations. Sometimes, they seem able to accept reality better than adults. Evasions can create more difficulty than the truth. For instance, saying ‘God came and took the baby” may cause a tear and hatred of God.
Another Baby?
Deciding if or when to have another baby is a private matter between the parents concerned.
Losing a baby in this way may shatter their confidence as parents. They may be afraid of losing another baby the
same way. These fears are natural but quite unjustified. SIDS does not run in families.
Once they feel they want another child, there is no reason to delay. Most SIDS parents who have another baby say it helps them greatly in overcoming their grief - but the most important thing is to want the new baby for its own sake.
Research
Research into SIDS is being carried out in Australia, Canada, the United States, the United Kingdom and Europe. It is being conducted at two levels:
• Looking for the cause, so that it may be prevented or avoided;
• Identifying babies who may be at risk, so that special preventive action can be taken.
Some research is being carried out in Australia, including Western Australia. However, a great deal more could be done. An eventual aim of the SIDS Foundation in W.A. is to raise funds to promote co-ordinaled research programmes in Australia.
Points To Remember
• The Sudden Infant Death Syndrome is a definite cause of death. Death is NOT due to suffocation, choking or neglect.
• SIDS cannot be foreseen or prevented.
• It can happen to both breast fed and bottle fed babies.
• Premature and low birth weight babies are not more susceptible.
• It does not run in families.
• It is the most common cause of infant death in WA. In WA. we average 43 deaths per year
(approximately 500/year in Australia).
• It is not catching.
• The babies do not suffer. Most are completely healthy before they die.
• It can happen in any family and has nothing to do with the ability of the parents, doctors or clinical sister in caring for the baby.
• The people looking after the baby at the time are in no way to blame. This includes you.
posted by Jacqui at Sunday, February 06, 2005
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