SIDS - Optimising immediate GP care
How can families be helped?
Most important is to give help and attention as quickly as possible. Either myself or a community paediatrician see the family at home or in A&E, usually within a few hours of the baby being found dead.
We spend time talking about what's happened, trying to help them understand what might have happened, but also collecting as much information as we can about the circumstances.
We return home with them and a member of the child protection team. We spend a couple of hours talking through events in great detail and examining the room in which the death occurred.
We make a video in the home with the parents explaining to us precisely where the baby was, and how the death occurred.
This helps the pathologist know if there are specific things to look for.
Most importantly, the family are able to talk through, shortly after the death has occurred, exactly what happened.
We than have to spend a great deal of time with them, allowing them to come back to a more calm state, and to think through the plan for the next day or two.
When we have the preliminary results of the postmortem I visit the family again with the GP or health visitor and tell them as much as we can about the nature and cause and the way in which their baby died.
Finally, we hold a case discussion with the professionals involved, to review in great detail what happened and to plan future care and support in particular whether special needs have been identified for present or future siblings.
I then write a long and detailed letter to the family with an explanation of what happened.
Advantages of a multi-agency approach
How do you work with the police when
a cot death occurs?
We employ a multi-agency approach involving the paediatrician, a member of the police child protection team, and social services. This ensures that families who have suffered a terrible tragedy are not unjustly or inappropriately accused.
By seeing the family with us, the police learn a great deal about the sensitive handling of families. We health care professionals learn how to look for evidence of circumstances in which a baby might have been harmed. The families give their history once, to both professionals together. They are cared for in a sensitive and appropriate way, and at the end of the process it is possible to be absolutely clear with families that nobody suspects them of having harmed their baby.
Formerly, questions might be asked much later because inadequate investigation had been done at the time of the death. Many families suffered the additional trauma of much later finding they were under suspicion, or even of being accused of having harmed their baby. I hope a sensitive multi-agency approach right at the beginning will make sure that this never happens again.
Clues to the causes of sudden infant death
Which families are most at risk for cot death?
Cot death is the sudden unexpected death of an infant (SUDI) for which we can't find an adequate explanation. It is now much rarer than 10 years ago. The number of deaths has fallen dramatically. Very few deaths now occur in middle-class families, and in non-smoking families.
Over the last 10 years the proportion of babies who die in more socially deprived groups is now much higher.
This represents the effects of information transfer and preventive measures, particularly against smoking. Smoking is now very much more prevalent in more deprived groups, and is the single most important contributory factor.
The population attributable risk from smoking that is the proportion of deaths that could be prevented if nobody smoked among the parents or in the environment of babies is around 60 per cent.
If we could get rid of the effect of smoking, then 60 per cent of those babies who die now would not die.
What clues are there to the causes of sudden infant death syndrome?
Almost certainly there are multiple factors, and the same ones don't necessarily apply in any two babies. We use the 'triple risk hypothesis'. Imagine a Venn diagram with three overlapping areas, one of which is the baby who's got a predisposition to dying suddenly. Whether this is genetic or individual is unclear. The second circle in this Venn diagram is developmental physiology.
All babies go through phases during the first few months when particular control systems such as the control of breathing and temperature and the ability to respond to infection are more vulnerable. The last circle of the Venn diagram is the final stressor that precipitates a problem.
In a baby who's predisposed, and going through a vulnerable phase of development, something happens a little out of the ordinary. Maybe under other circumstances this would have no adverse effects, but it leads to this baby dying.
It may be a minor viral infection, perhaps in an environment where the baby's hotter than usual, it may be a major disturbance of their normal sleeping position and behavioural pattern, so that they're sleeping more deeply. These three together on a particular day, in a particular baby, may account for that baby dying suddenly.
What are the current numbers, and how has this changed in recent years?
In the UK, before the late 1980s, the incidence of SIDS was one in 428 births. Around 2,000 babies died every year as cot deaths. After the Back to Sleep campaign in the late 1990s it fell to one in 2,650 births.The total now is around 300 deaths per year.
Does breast-feeding reduce the risk of a cot death?
Breast-feeding was shown in some studies, particularly in Scandinavia, to have some protective effects. In a series of very large studies we have conducted in the UK we were unable to find evidence that breast-feeding by itself had a major protective effect. But what we did find was that babies who were breast-fed are much less likely to get infections, they grow better, and there are so many other advantages that clearly this should not be taken as evidence that mothers shouldn't breast-feed.
But within our population, because breast-feeding and smoking are almost mutually exclusive, trying to look for a protective effect of breast-feeding other than the protective effect of not smoking is very hard.
In our big study with more than half a million births, we found no significant protective effect from breast-feeding on the rate of cot death, but we did find evidence of protection in many, many other areas.
Is it advisable to let the baby sleep in the parent's bedroom until six months?
In the CESDI study we found that the risk of SIDS was doubled if infants slept in a separate room.
Perhaps this relates to closer mother-baby interactions and heightened maternal awareness of baby's needs.
Could you clarify the risk of there being two
SUDIs in a family?
The risk of a family having a second baby die of SIDS is not greatly different to the risk for that family of having a first baby die. That is not to say the risk is the same for every family; clearly it is not. The risk is much higher for families living in poverty, socioeconomic deprivation, smokers, children put down to sleep on their fronts, or with excessive wrapping.
Families who have any of these factors with one baby will likely have them with the next baby. So the risk to the next baby is commonly higher than for the general population.
For families with several risk factors the risk of a baby dying may be relatively high one in 200 or even higher. For families with none of the risk factors the risk of SIDS is very low maybe as low as one in 8,000.
Even if there were no genetically determined factors the risk of a second death in a high-risk family would be one in 40,000; not a particularly rare event. For families with no risk factors the chances of a second death would be very low about one in 70 million and one would want to look much harder for other factors that might have contributed. This is not intended to be an estimate of the real risk, however there are so many unjustified assumptions in it and this sort of analysis cannot be used for any individual family.
Which theories have now been discredited?
Several studies have failed to show any support for the 'toxic gas' hypothesis from mattresses. In a very small subgroup of deaths a prolonged Q-T interval may be of importance, though again this is not likely to be a major factor in most deaths.
Immunisations have been a cause of concern to parents, but our studies show that on the contrary immunisations have a protective effect.
Despite several large studies there is no evidence that the use of a monitor lowers the risk of SIDS. Their main value is as an additional support for families who have lost a previous baby and get some reassurance that baby is OK without needing to check repeatedly.
For some families, however, monitors may make things worse as false alarms may heighten rather than reduce anxiety.
What part does non-accidental Injury play?
During the 1990s an investigation concluded that around one in 15,000 births died because of harm by a carer. Deliberate harm, neglect, or carelessness often impossible to separate now represent around 10 per cent of the total.
The fall in the overall number of cot deaths has not been accompanied by any fewer deaths caused by murder or deliberate harm, so this group represents a larger proportion. The great majority of SUDIs are still natural, tragic events where nobody is to blame.