What is Cot Death?

A cot death is the sudden, unexpected death of a baby who previously had seemed completely well or had only a minor complaint such as a cold or a tummy upset. Such deaths most commonly happen when a baby is asleep in a cot, carrycot or pram, but they can happen anywhere, even in someone's arms. Cot deaths are rare but are the single most common cause of death in babies after the first week of age. They are more common in boys than in girls, in winter than in summer and in second or laterborn rather than firstborn babies in a family. About 80% of cot deaths occur before six months of age.

Why did it happen to our baby?

Between 20 and 30 babies die each year in Scotland suddenly and unexpectedly. Nobody knows beforehand which family or which baby in the family is likely to be affected so nobody can answer this difficult question. If your baby is found face down or covered with bedclothes, it is natural to worry that the baby may have been unable to breathe. However many babies often sleep in these ways with no harmful effects and, indeed, many cot deaths occur when the face is clear of bedding. There may be traces of sickness or even blood on the sheet but this does not mean that your baby choked - this sometimes happens in the act of dying. Your baby's face may have been discoloured. This is perfectly normal when someone has died.

Did we do anything wrong?

After the first shock of finding your baby dead you may begin to wonder whether you should have noticed something unusual in your baby's behaviour or should have done something different. These feelings are completely natural but a Cot Death is something beyond any parent's control. Many cot death babies have been cared for far better than others who survive.

Did our baby suffer?

So far as we know, cot death babies die suddenly, silently and with no pain or struggling. It seems like a light going out. Death is peaceful and there is no suffering. 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.

Could our baby’s death have been prevented?

No, since your baby’s death occurred quite unexpectedly. You did not know it was going to happen and neither did anyone else. No one knows how to predict cot death. Although there are suggested ways of reducing the risk, they are no guarantee of prevention.

What will happen now?

The first few days are full of anguish and bewilderment for parents and their families. These notes are to help explain procedures and for guidance through the first difficult days.

After any sudden death in Scotland, including a cot death, the Procurator Fiscal must make enquiries. He/she is told of the death by the police or perhaps your doctor.

The Procurator Fiscal will arrange for the police to visit your home and to ask you some questions about, for example, your baby’s health and the pattern of feeding and sleeping in the hours before death. They will look at the room where your baby died and may take away bedding, feeding bottles and any medicines. Do not be alarmed by the police enquiry; this is standard procedure which may differ slightly from area to area, for example, in the number of visits made by various police officers.

The Procurator Fiscal will arrange for a pathologist to carry out a post-mortem examination of your baby to try and find the cause of death. Before this examination you, or someone who knows your baby, may be asked to identify him or her. Even if this is not required you may still want to see your baby again at this stage and the hospital can arrange this for you. This is an opportunity for you to say goodbye to your baby in a quiet atmosphere.

If death has occurred at home your baby will be taken from the house by the police, an ambulance or a funeral director, usually to the hospital in the area where the examinations are performed.

If death has occurred in hospital or on arrival at hospital the police will still carry out their investigations.

It is important that you know what is happening to your baby and where your baby has been taken. If you are unsure, the police officers will be willing to explain things to you. Do not be afraid to ask.

The pathologist will inform the Procurator Fiscal of the results of the post-mortem examination and will arrange for you to be given the death certificate which will allow you to register your baby’s death and to make arrangements with a funeral director for the funeral. There may be a delay of several weeks in receiving the final report on all the tests done. This is difficult for you but it is unavoidable as it takes time for all the procedures to be carefully carried out. In some areas this report can be explained to you by the pathologist and in other areas by your family doctor or a paediatrician (a hospital doctor) with a special interest in cot death. There is a list of these at the back of this booklet. You are legally entitled to have a copy of the final post-mortem report if you wish it.

The cause of death given on the death certificate will vary according to the pathologist. Terms such as “Sudden Unexpected Death in Infancy” and “Not Ascertained” are most likely. Very few pathologists will use the term “Sudden Infant Death Syndrome” (SIDS) or Cot Death at this stage of the investigation although they may notify the Procurator Fiscal of a change to SIDS if all the post-mortem test results show no explanation for your baby’s death. This does not always happen and you do not need to take any action on this. If a definite cause of death is found at the initial examination, such as meningitis, the pathologist will write this on the certificate. Only about 20% of sudden unexpected infant deaths are found to be due to a specific cause.

Registering the death

The death must be registered with the Registrar of Births, Deaths and Marriages within 8 days. This may be done at the Registrar’s office in the registration district where you live or where the death occurred. You may wish to register the death yourself or ask a relative to do it for you. The funeral director, your doctor or the police will give you the address or you can find it in the telephone directory.

You should take your baby's birth certificate along with the death certificate to the Registrar. The Registrar will give you a certificate of registration of death (free of charge) which is needed before the funeral can go ahead. You may wish to ask for a copy of the entry in the Register of Deaths; there is a charge for this.

The funeral

You cannot make the final funeral arrangements until you have the death certificate but you can make the preliminary arrangements before this. The decision whether to have a cremation or a burial and the type of service you want is your own, although you can ask for advice from your minister of religion or the funeral director. If you choose a cremation an extra form (E1) must be obtained from the Procurator Fiscal’s office. In some areas the funeral director will arrange this for you. In others, you may be asked to collect it yourself, taking with you your baby’s death certificate.

Your baby's father or mother should still be informed of the baby's death and of the time and place of the funeral even if you are separated or divorced.

You may make your own arrangements for the funeral but most people go to a funeral director who will arrange everything for you and will normally be most sympathetic and helpful. The funeral is the last thing you will do for your baby, so do not let other people rush you into decisions.

Here are some of the ideas from bereaved parents of the choices they made:

• You may wish a lock of your baby’s hair. If so let the funeral director know.
• You can either allow the funeral director to dress your baby in the clothes of your choice or, if you prefer, you may dress your baby yourself. If you want to do this, discuss your wishes with the funeral director.
• You may wish to place a favourite toy beside your baby in the coffin and older children may like to put in a little drawing or a letter. Being present at the funeral may help them to work through their own grief. It may be a good idea to ask a friend or relative to look after them at the service.
• You may wish to take photographs of your baby or ask someone else to do this for you.
• You may want to arrange with the funeral director to see your baby in the funeral parlour or to have your baby brought in the coffin to your home.
• If you choose a cremation for your baby, it should be possible for the Crematorium to provide the ashes. You can either place these in the Crematorium Garden of Remembrance or in a favourite place of your own choice.

Funerals can be expensive. Funeral directors’ charges vary and you should ask for estimates. Some funeral directors do not charge for their services when a baby is involved. A cash grant to help with essential funeral expenses may be given if you are receiving Income Support, Housing Benefit or Working Families Tax Credit. Ask at the Benefits Agency before making any arrangements.

Other things to do

You should return your child benefit book to the Benefits Agency and ask for a new one if you have other children. You should not cash any orders after your baby has died.

If you have opened a Savings Account in your baby’s name this will have to be closed.

If you have any children who attend school it is helpful to let the teacher know what has happened.

If you have a postnatal or other clinic appointment ask your health visitor to make sure that the hospital or clinic knows about your baby’s death.

If you are breastfeeding ask your health visitor or doctor for advice about drying up your milk.

Even although your baby has died you are eligible for free prescriptions and dental treatment for a year after the birth.

What about our family?

If you have other children, they may react in their own way to the death of their baby brother or sister. Some may appear unconcerned, others may be especially demanding and irritating. Toddlers may not really understand what has happened but they will sense your grief and need extra loving care to feel secure. Older children will understand and grieve. Don’t feel that you must hide your grief from your children.

By letting them see your distress you may help them to express their own. Take care, however, that in your own pain you do not reject or neglect them. They need explanations and reassurance that the same thing will not happen to them or you, and that they need not be afraid to go to sleep. It’s best not to say “Our baby died in his sleep” or “The baby went away” to your other children. How you explain the death to them depends on your own beliefs and the age of the child but they should be helped to understand that their brother or sister has died and will never come back. They should be assured that it was nobody’s fault. This is especially important if one of your other children was jealous of the new baby.

If your baby was a twin your family doctor will probably examine the other twin, to make sure all is well. In some areas the other twin may be admitted to hospital for a few days.

Grandparents also need help and information. They will be grieving not only for the loss of their grandchild but also for you. There is a separate section on information for grandparents which offers some assistance for them.

What about us?

When someone we love dies we experience grief; this is the price we pay for loving. Everyone reacts differently but some of the feelings described by bereaved parents are of numbness, physical pain, difficulty in eating, sleeping or concentrating. You may imagine that you hear or even see your baby and your arms may ache to hold your baby.

Some people find that they constantly relive the awful experience of finding their baby dead. You may feel anger, guilt, fear or self-reproach. All these feelings are completely normal. It is difficult to believe that they will ever go but in time the pain will lessen. You will never forget your baby who will always be part of your family. It helps to talk about your baby, to look at photographs and to remember the happy times. Grief may recur at anniversaries and at other times, sometimes for no reason at all. The process of recovery takes longer than many people expect but eventually you will be able to look forward again.

To whom can I talk?

Often husbands and wives are the greatest comfort to each other but in other cases they may not be able to grieve together and then it is important to speak to someone else - a relative, close friend or a neighbour. Sometimes your health visitor can be a great help, as can your family doctor and your minister of religion. You may not feel like talking much to anyone at first but try to speak to someone close to you. It is important to realise that reactions are often different between men and women. A mother may want to talk about the baby’s death over and over again, while fathers may find it very difficult to speak about the baby although they are suffering just as much. Sometimes a father will find it easier to talk to another man who has been through the same experience. Similarly a mother may find it helpful to speak to another mother who has lost a baby through cot death. The Scottish Cot Death Trust can try and put you in touch with someone who can support you in this way.

Other people’s reactions

While many of your friends and neighbours may be a great support to you some will not know how to handle the situation and may even avoid you. The best way to cope with this is to make the effort to mention the baby so that they feel more able to respond to your loss.

They should understand that you may need to talk over the death again and again. Some people may assume that fathers, who are sometimes less inclined to talk, are somehow less affected by their baby’s death. They, too, need the support of friends and colleagues.

Be prepared for the fact that not everyone yet understands what cot death is and some will repeat old wives’ tales and theories as to the cause of death. This ignorance can be very hurtful, as can misleading comments in the press and on television.

Subsequent children

If and when you choose to have another baby this will be a new member of the family and should not be regarded a replacement for the baby who has died.

You will obviously be more anxious about your next child and will need some extra reassurance from your family doctor and your health visitor. Remember that many parents have enjoyed the happiness of a new baby after a sudden infant death and that the risk of cot death occurring again is very small indeed. You may consider having a breathing monitor for your next baby and this can be discussed with the maternity hospital.

Additional Help

The Scottish Cot Death Trust aims to provide support not only for the bereaved family but also for the professionals involved in the stressful task of caring for the family.

In addition, the Trust acts as a centre of advice for both parents and health care professionals on ways of reducing the risks of Cot Death. Regular Roadshows and conferences provide a valuable opportunity to update understanding of the problem and to interact with others with an interest in the problem.

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

Click here for a list of Healthcare Professionals that have a special interest in Cot Death and will discuss your baby's death with you if you wish.