About Grief

Losing a child is perhaps the most painful experience any parent can have. When the loss is without warning or explanation, it is even more unbearable. The immediate reaction of parents to such a death is total shock. Feelings of denial, unreality and numbness are common and parents often feel they are living in a nightmare from which they will wake up.

Grief is a very personal emotion and everyone will experience it differently. There are many different emotional responses – sadness, anger, fear, blame, despair and guilt are all common and some of these may last for years. Some people find it helpful to go over the events leading up to the death again and again, finding that it eases the pain to talk in this way. Others find no comfort from this and shut themselves off in their own world of grief. Parents will grieve differently and may find that they are unable to provide much support for each other. It can be very helpful to share what they are feeling with someone outside the family such as their doctor or social worker.

Some of the physical manifestations of grief can be very hard – nausea, pain in the chest and arms, exhaustion. The bereaved person may also fear that they are losing their mind. All these are normal parts of the grief process.

Grief is not something which can be measured in terms of time. The emotions involved can resurface for many years, particularly at anniversaries, birthdays, family celebrations and special landmarks, such as when the child would have started school. Although the acute pain will gradually diminish, the baby who died will never be forgotten.

The London Marathon

You’d love to take part in the London Marathon but don’t have a place? The Scottish Cot Death Trust has seven reserved “Golden Bond” places for this fantastic event in 2005. If you would like to run to support the fight against Cot Death and can commit to raising £1,000 for the Trust, we would love to offer you one of our places. Even if you have secured your own place, please consider supporting our charity. Email us on [email protected] for sponsorship forms, t-shirt etc.

O. J. ran the 2004 London Marathon for the

Trust dressed as a clown

Information and Advice

Cot Death, more correctly known as Sudden Infant Death Syndrome (SIDS) was defined in 1969 as “the sudden death of a infant or young child which is unexpected by history and in which a thorough post mortem examination fails to demonstrate an adequate cause for death”.

SIDS is now rarely used on death certificates in Scotland. Terms such as “Sudden Unexpected Death in Infancy” and “Unascertained” are now much more likely to be used.

Statistics

Between 40 and 50 babies die suddenly and unexpectedly each year. A cause for the death will be found in around 20% of cases. The rest will remain unexplained.

The current rate of 1 Cot Death for every 1,600 livebirths is much lower than 10-15 years ago. The graph below shows the dramatic decrease which was almost certainly the result of advice to parents not to put their babies on their tummies to sleep.

The medico-legal process following a Cot Death

In Scotland the sudden, unexpected death of an infant must be reported to the Procurator Fiscal. It is the responsibility of the Procurator Fiscal to exclude any possibility of criminality. He/she will instruct the police to carry out an investigation of the circumstances. This will include an event scene examination and interviews with the bereaved parents and anyone else who was in the house at the time of death. The Procurator Fiscal will also require a pathologist to carry out a post mortem examination.

Following the post mortem examination the pathologist will issue a death certificate which will either give a definite cause of death (if one has been identified) or a diagnosis such as “sudden unexpected death in infancy” or “unascertained”. During the post mortem examination the pathologist will have taken samples of tissue and blood. When the results of tests on these samples are available a cause of death may be revealed in a small number of cases. In others, a possible contributory factor to death may have been established although this does not adequately explain the death. In the majority of cases, there is no explanation at all for the death.

Facts about Cot Death

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If your grandchild has died

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As a parent yourself, there can be few things more painful than watching your own child experience the loss of his or her baby. Perhaps for the first time in your life there is nothing you can do to take away the hurt and “make it better”. In addition, you are mourning the death of your grandchild. You may feel guilty that you, who have had many years of life, are still alive while a tiny infant has died. You may also feel guilty and sad that you did not spend more time with your grandchild while you had the chance. If you live at a distance, you may not even have seen your grandchild. it doesn’t help to know that you thought you had lots of time.

You may feel very angry – with God, with the medical profession who failed to save your grandchild, with your own child if your understanding of Cot Death is incomplete and you wonder if there was anything the parents could have done or should have seen. Cot Death is NOT predictable and NOT preventable. You can help by reassuring the parents that they did everything they could, that there was nothing that they missed and that there was nothing anyone could have done to save their child’s life.

You may find it difficult to know how best to help the bereaved parents. Sometimes, in their grief, they may push away your efforts to assist. Try not to take this personally – it is part of their pain and distress. the most hurtful thing you can do is withdraw your support. The best thing you can do is just be there, to listen, to accept any feelings that are expressed.
Allow them to talk as much and as often as they wish about their child. It is sometimes hard not to interfere, to give advice. Give as much help as is welcomed but be sensitive to the parents’ need to be left to make their own decisions.

As time passes, it is important that the parents know that you have not forgotten their baby. Often relatives avoid mentioning the baby for fear of reminding the parents of their pain, or change the subject when they mention the baby. Ignoring the fact their baby lived causes more, not less, hurt. They may need to talk about the baby long after the death, especially at anniversaries.

Grief is intensely personal and everyone grieves in their own way, at their own pace. There is no “correct” way to mourn, and you should never say “you ought to be feeling better now” or anything else which implies a judgement of their feelings. You can’t take away the parents’ pain or bring your grandchild back but you can make the parents’ adjustment to the loss easier by accepting their feelings and supporting them as they go through the grief process.

It is important to recognise your own right to grieve. To be helpful to your child, you need also to be helpful to yourself, to deal with your grief by facing it and working through it. Make sure you give yourself time and space for this.

If you would like additional assistance or information, either for yourself or your family, please contact:

The Scottish Cot Death Trust

Information for Family Doctors and Health Visitors

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Definition of Cot Death

A Cot death is the sudden unexpected death of a baby who was previously well or suffering from an apparently minor ailment such as a cold or a gastric upset. If, after a thorough police investigation and post mortem examination, no adequate cause of death is found the death will be certified in one of the following ways: Sudden Infant Death Syndrome, Sudden Unexpected Death in Infancy, Unascertained or Undetermined. Different pathologists use different terminology but all such deaths are eventually classified in the annual Report of the Registrar General as Sudden Infant Death Syndrome (SIDS).

In the UK the term Cot Death is almost always used by the general public for sudden unexplained infant deaths and we have followed this practice for the purposes of this leaflet.

Incidence

During the last decade there has been a dramatic decrease in the incidence of Cot Death, from a rate of 2.5 per 1,000 livebirths in 1989 to a current rate of around 0.6 per 1,000 livebirths. Despite this decline Cot Death still accounts for the deaths of more children over one week of age than any other single cause.

A visit from the GP as soon possible after the death is greatly appreciated. He/she should avoid prescribing unnecessary sedation as this tends to delay the normal grief process and necessary expression of feelings. Parents may regret at a later point their inability to be fully involved. Short acting hypnotics to assist sleep may sometimes be appropriate. If the mother was breastfeeding, she will need advice on coping with continued lactation.

If the death is that of a twin, the remaining twin should be carefully checked and an apnoea monitor is often issued if the parents wish this. In most areas the baby is admitted to hospital for observation.

A visit from the Health Visitor soon after the death is also very important. He/she can check that the family has received a copy of the leaflet “Information for Bereaved Parents” (available from the Scottish Cot Death Trust), which will explain the legal procedures which follow a sudden death. Reassurance should be given to the parents that these procedures are routine and do not indicate that the family is under suspicion of wrongdoing. It is important to ensure that any hospital appointments for the baby have been cancelled and that, if the mother still has to attend for post-natal check-up, arrangement are made to ensure the minimum distress. The maternity unit where the baby was born should also be informed.

Parents often do not know what to tell their children. Research has shown that it is best to tell the truth – to explain that the baby has died and will not be coming back. Even if children are too young to understand the concept of the permanence of death, use of the proper words at this stage is important. Children may think that the baby’s death was their fault or be frightened to go to sleep. They need to be reassured that no-one is to blame and that Cot Death only happens to small babies. They also need reassurance that their parents, despite their grief, still love them.

It is now considered important that siblings should be given the chance to attend the funeral service, to say good-bye. Since parents may be too preoccupied with their own grief to cope with them, it is advisable to have another adult whom the children know and like to help look after them at the service.

Siblings often show regressive and difficult behaviour in the days after the baby’s death. This can be immensely stressful for the emotionally exhausted parents. They need reassurance that such behaviour is normal and that their own feelings of irritation are also normal.

The strong feeling of guilt experienced by parents needs to be alleviated. With present day knowledge no-one can either predict or prevent these tragic deaths and this should be clearly stated and emphasised.

In each Health Board Area there is a consultant paediatrician with a special interest in Cot Death who is willing to see parents and to discuss the post mortem results. Parents may ask about the risk of recurrence. There are no reliable statistics on this but the chances of another Cot Death in the family is very rare (perhaps 4-5 times the population rate of 0.6 per 1,000 livebirths) and should not deter families from having another child.

The parents’ initial state of shock and numbness may help them through the first few days or even weeks and they may give the impression that they are coping very well when, in fact, they may not have yet begun to face the reality of their baby’s death. This state is usually followed by a period of great anguish. Parents are often very frightened by their grief reactions. They describe difficulty in sleeping, nightmares, imagining hearing and seeing their baby, pain in the chest and arms, strong positive or negative sexual feelings, nausea and feelings of panic, fear and isolation. They need reassurance that all these are normal symptoms of grieving and that they will, in time, pass.

There may be loss of appetite, heavy drinking or smoking and some parents may have thoughts of suicide.

Frequently parents find that they cannot talk to each other about the baby and this is where a supportive GP and/or Health Visitor can be very helpful, giving an opportunity to the parents to talk separately about their feelings. Fathers, in particular, may bottle up emotions unless they are encouraged to express them.

As the grieving process continues depression often occurs, leaving the parents with feelings of tiredness, failure and worthlessness. Recovery comes very gradually, although there will still be painful anniversaries to cope with and the loss will always be there.

If and when the parents decide to have another baby there will understandably be increased anxiety and lack of self-confidence. Extra visits from the Health Visitor are often very much appreciated, as is easy access to the family doctor for what may appear to be minor concerns. Many parents value the provision of an apnoea monitor from the maternity unit and this is available at no cost, along with training in resuscitation techniques and follow-up from a consultant paediatrician.

The Grief of Children

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Children have been called the “forgotten mourners”. They are inevitably affected by the death of their younger brother or sister. How they react to this depends very much on their age and stage of development but at any age they are affected by their parents’ distress and the upheaval in the home. Many children will have witnessed also the horror and drama surrounding finding the baby dead.

It is more important that a truthful explanation of what has happened is given to children, at a level they can understand. Explain that the baby has died and will never come back. Even if the child is too young to fully understand the concept and permanence of death, you will have laid the right foundations for future understanding. It is much better to give information that can be built on at a later stage, as the child’s understanding grows, and not answers that have to be “unlearned”. Avoid explanations such as “God wanted him in Heaven” or “she went to sleep” as they cause confusion and distress and children may fear the same thing will happen to them. If they were jealous of the new baby, they may worry that their feelings caused the death and need reassurance about this.

Each child will react differently to the loss of the baby. Some may appear unconcerned. Others may regress in their behaviour and become very demanding and difficult. Although this places an even greater burden on parents struggling to cope with their own overwhelming emotions, it is important that children receive extra loving care, to make them feel secure. Relatives and friends can sometimes help with extra attention and support.

Parents may feel that they should not show their grief in front of their surviving children. This is not so. Children need to share in the tears, to know that it is all right to be sad and angry, to talk about the baby and look at photographs. They may find it helpful to draw or paint pictures.

The decision whether or not to let the child share in the funeral is a personal one for parents, but there is increasing evidence that children benefit from being included in this final ritual and may feel very shut out if they are not. Fantasy can paint a much more frightening picture than fact. Your priest or minister may be helpful in deciding what you should do about this.

If you have any worries about how your child is coping, talk them over with your doctor or health visitor.