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 throughout this website.

Incidence

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 0.4 per 1,000 livebirths. Despite this decline Cot Death still accounts for more deaths of children over one week of age in the first year of life than any other single cause.

Initial Contact

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 in the arrangements for their baby's funeral. Short acting hypnotics to assist sleep may sometimes be appropriate. If the mother was breastfeeding, she will need advice on coping with continued lactation.

Current State of Research

Despite an immense amount of research there is still no explanation of the mechanism of death in these infants. It is anticipated that no single area of study will provide the answer but each may contribute to our understanding.

Questions often asked by parents

• Will bedsharing with the baby increase the risk of Cot Death?
• Research suggests that there is an increased risk in bed sharing with a small infant (under 12 weeks if full term). Co-sleeping with an infant on a sofa or chair should always be avoided. The safest place for a baby to sleep is in a cot on a firm mattress.
• Should our baby sleep in our bedroom?
• Several studies have indicated that babies are at lower risk of Cot Death if they sleep in the parental bedroom. The Government advice is to keep the baby in the parents' bedroom for the first six months.
• Will breastfeeding reduce the risk of Cot Death?

There is new evidence that breastfeeding is a protective factor against Cot Death and it is strongly recommended for good infant health.

Is immunisation linked to Cot Death?

Immunisation has been shown not to be associated with Cot Death. In fact, recent studies show that, if anything, babies who are immunised are at lower risk.

Is it true that toxic gases from infant mattresses can cause Cot Death?

Two separate Government Inquiries to investigate this possibility found no evidence to support the theory. However, two studies by the Scottish Cot Death Trust have suggested that babies sleeping on a previously used mattress may be at increased risk of death - perhaps because of micro-organisms present in the mattress. It would seem advisable for parents to avoid re-using a mattress, particularly if it comes from another home.

Will my baby develop plagiocephaly if I always place him on his back to sleep?

Babies' skull bones are very soft in the early months and some babies develop slight distortion of these through the process of lying on their backs. About 90% of these cases self-correct in six months when baby becomes more active and spends less time asleep or lying down. If parents are worried about plagiocephaly, they should place the baby at opposite ends of the cot on alternate sleeps. Babies will turn their heads towards the light and so will alternate sleeping position.

Risk Reduction Advice

• Place baby in a cot on his/her back to sleep
• Do not sleep with a small baby in your bed or on a chair or sofa with any baby
• Avoid smoking during, and after, pregnancy
• Avoid overheating baby
• Place baby's feet at bottom of cot to avoid slipping under the covers
• Consult a doctor if baby seems unwell

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 wrong-doing. 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, arrangements are made to avoid distress. The maternity unit where the baby was born should also be informed.

Other Children in the family

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 thought to be important that siblings 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 and you might suggest this to the family.

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.

Reassurance

The strong feeling of guilt experienced by parents needs to be alleviated. Even 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 will see parents and discuss the post mortem findings with them. A list of these specialists is at the back of this leaflet.

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 3-4 times the population rate of 0.4 per 1,000 livebirths) and should not in itself deter families from having another child.

In the longer term

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, imagine 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.

The Trust has a Bereavement Support Worker who can spend time talking to the parents and to members of the extended family about their feelings and may offer additional contact with a trained Befriender, another parent who has experienced the loss of a baby to cot death.

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.

Another pregnancy

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.

If there have been staff changes since the birth of the last baby, it is recommended that new staff are informed of the history and, depending on the length of time elapsed, existing staff reminded. Families often move home after a baby dies in which case all professionals will need information to avoid distress and upset.

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.

Factors associated with Cot Death

The cause of SIDS is still unknown. It is probably multifactorial with interactions between physiological, maternal, infant and environmental elements. A range of different factors has been associated with an increased risk of SIDS as confirmed by the 1992-1995 Scottish SIDS Case-Control Study (Brooke et al, BMJ 1997;314:1516-1520) and other studies:

• The age of the infant: Cot Death occurs most frequently during the second to fourth month of life. It is uncommon in the first month and the rate decreases sharply after six months. 85% of all Cot Deaths are in babies under 6 months of age. A small percentage of deaths (around 3%) are in babies in the second year of life.
• The gender of the infant: Male infants are more vulnerable than females, with a male:female ratio of at least 2.2:1.0.
• Seasonal Incidence: In Scotland Cot Deaths are more common in winter than in summer, with 60% of deaths occurring in winter/spring compared with 40% in summer/autumn.
• Birth order: Second and later born infants in a family are at greater risk than firstborn.
• Maternal Age: The mean maternal age of mothers who suffer a Cot Death is three years younger than the general maternal population.
• Obstetric Factors: Preterm and low birthweight babies are more at risk than full term infants. In the Scottish Study 25% of the Cot Death infants fell into this category compared with 8% of the general birth population. SGA infants are also more vulnerable, as are twins.
• Socio-Economic Factors: Several studies have confirmed deprivation as a risk factor for Cot Death. Parental smoking may also increase the infant's vulnerability, particularly maternal smoking. Babies whose parents misuse alcohol or use illegal drugs are also more likely to be found dead.
• Infant Care Practices: Prone sleeping is now accepted as a highly significant risk factor for Cot Death. Side sleeping also increases risk since infants can easily move prone from this position. Overheating may increase vulnerability and several studies have shown that babies whose heads are accidentally covered with bedding are at greater risk. There is evidence from international studies that breastfeeding appears to protect against Cot Death. Bed sharing or co-sleeping is also a risk factor and particularly dangerous is sleeping on a chair or sofa with a small infant.

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.