Sudden infant death syndrome (cot deaths)

Citation

(2006), "Sudden infant death syndrome (cot deaths)", Health Education, Vol. 106 No. 3. https://doi.org/10.1108/he.2006.142106cag.001

Sudden infant death syndrome (cot deaths)

Since 1991, when mothers were offered practical advice on how to avoid cot deaths, it has been estimated that some 14,000 infant deaths have been prevented. Despite this, 300 babies per year still die from sudden infant death syndrome (SIDS), which for babies over one month old is more than all other causes put together. The distribution of SIDS within the population is far from even. Mothers from poorer families are far more likely to experience SIDS and over the past twenty years this proportion has increased from 47 per cent to 74 per cent Over the same period the proportion of sudden infant deaths among mothers who smoke has also increased from 57 per cent to 86 per cent. SIDS is also more common in babies who are premature or who have low birthweight. One of the pieces of advice that has contributed to the overall reduction in SIDS was for mothers to avoid sleeping with their babies. While this advice appears to have been accepted by mothers, rather worryingly, there has been a 400 per cent increase in the number of babies who die after sharing a sofa with their mother. Researchers still have to identify the main reason for cot deaths but there is still a great deal mothers can do for themselves if they know what to do. The internet could be one source of advice and guidance that may have a significant part to play in further reducing the number of cot deaths.

The Foundation for the Study of Infant Deaths

www.sids.org.uk/fsid/

The Foundation for the Study of Infant Deaths is one of the foremost organisations involved in the study of SIDS. The web site is an excellent example of how the internet can be used to provide information and support for those who need it. The Foundation has three main aims, promoting baby safety advice to parents, supporting families who have been unfortunate enough to suffer cot death, and funding research into cot death. These three aims are reflected in the design of the web site that is attractive, interactive and very accessible. The information content begins with a summary of the main statistics associated with SIDS. National distribution figures, changes in the incidence of cot deaths over time, and definitions of cot death can be found here. The next section is the main information source and will therefore be of interest to most users. What is Cot Death, seeks to answer, in simple terms, many of the questions lay people are likely to ask. In fact it goes one better than this by actually allowing readers to submit their own questions that are then published on the web site with accompanying answers. As well as online information the web site also offers a number of leaflets that can be downloaded free of charge. These leaflets are aimed at professionals involved with SIDS as well as the general public. In addition to the guidelines for general practitioners, midwives and health visitors, which might be expected, there is also a leaflet for police officers which offers advice on how they should approach the death of a baby with sensitivity, even though a sudden death might be thought suspicious. This section of the web site is well thought out and the information is presented concisely in a way that is easily digestible.

The Support section of this web site is particularly good offering advice, booklets, a telephone helpline and what is called Befriender support. The befrienders are parents who themselves have experienced cot death and have been trained to offer support, usually within a local area.

Being positive and thinking of the future the web site provides the CONI scheme. CONI, (Care Of the Next Infant) recognises that parents who have suffered cot death may feel anxious about having another baby. The CONI programme, which is run through local hospitals, helps parents work through their fears and anxieties, as well as providing links to health visitors, paediatricians and midwives.

Finally, and in some ways the most important part of this web site, but also the most upsetting, is the In Memory Of section. Here parents who have lost babies submit their pictures, words, thoughts and feelings in memory of the baby they have lost As far as possible they are published with little editing, and they are incredibly moving. If you only look at one section of this web site, then make it this one, but be prepared, because you will be moved to tears.

The Baby Centre

www.babycentre.co.uk/refcap/419.html

This web site is sponsored by Johnson’s baby products, as its many advertisements make quite obvious. The web site is concerned with all aspects of baby health, there is even an interactive tool to test your baby-making IQ! The section dealing with cot deaths is very simple, wholly text based, and is designed around a series of questions. The questions are what might be expected, e.g. What is Cot Death, What Causes Cot Death, Which Babies are Most at Risk and so on. In answering the question What Causes Cot Deaths, the web site tends to focus on medical explanations, for example citing a defective brain stem or abnormalities in blood pressure. Although the social and behavioural correlates with cot death, i.e. smoking by the parents, sharing a bed with the baby, poverty, etc. are mentioned, they are not as prominent as the medical explanations that are offered and this is probably the main weakness of this web site. This is not a particularly engaging web site, certainly all the main information you would expect can be found, but what is really lacking is the social support dimension. Indeed, perhaps the best thing that can be said about this web site is that the further information link points to the Foundation for the Study of Infant Deaths, the web site described above!

Cot Death Prevention

www.cotdeathprevention.com/index.html

Now this is an interesting little web site that appears to have the answer to cot death well and truly sorted. The Foundation for the Study of Infant Deaths has been spending millions of pounds trying to find the cause of cot deaths when it could have saved every penny by spending five minutes perusing this web site. Not only does this web site know the cause of cot death, it also has the answer and it can be yours for as little as $28!; this web site sells mattress covers. But in order to persuade you to buy one it first needs to provide a pretty convincing case that a build up of toxic gases in the mattress is responsible for sudden infant death. It attempts to do this by citing a number of studies that claim to show that these toxic gases do build up over time and can be damaging to the central nervous system of an infant. The web site doesn’t explain why post mortem examinations have so far failed to find any trace of these toxic gases in the infants that have succumbed. They do provide anecdotal evidence suggesting that the fall in cot deaths is due to people using their mattress covers. Indeed they suggest that not one single baby has suffered cot death where their mattress covers have been used. Now of course this might all be correct and the Foundation for the Study of Infant Deaths are barking up the wrong tree. But remember snake oil salesmen abound on the internet as elsewhere, buyer beware!

Scottish Cot Death Trust

www.sidscotland.org.uk/index.html

The Scottish Cot Death Trust is a small charity that was founded in 1985 and has as its aims, the support of bereaved parents, the funding of research, and the education of the public and health care professionals. In many ways it might be considered the Scottish equivalent of the Foundation for the Study of Infant Deaths, discussed above.

The main sections that will be of interest to most people will be found under the “info & advice” and “support” links. Although the advice and info section isn’t as extensive as elsewhere, the major points are all well summarised and can also be downloaded as a pdf file. Perhaps one limitation in the advice offered is that there is no mention of sleeping with the baby or even just lying on a sofa, which are both risks. The support section is particularly good and it provides good advice on coping with grief, not only for the parents, but also for others who are involved, for example children and grand parents. There is also a section aimed specifically at doctors and health visitors, explaining what they should try to do to help the parents at this sad time.

For researchers, academics and health professionals there is quite a good section on research that is underway or has recently been completed. Unfortunately only summaries of the research are presented here; it would have been useful to have links to the original journal publications.

The Education section is a good resource containing leaflets that can be downloaded as well as details of speakers who will give lectures to the police, health professionals, Rotary clubs and other community groups.

In design terms, perhaps not the most exciting of web sites, it is a little uneven in terms of the content of different sections, but it will probably meet the needs of most people who are seeking information on cot deaths.

NHS Direct

www.nhsdirect.nhs.uk/en.aspx?articleId=353&sectionId=5172

NHS Direct is the online service offered by the National Health Service in the UK. Like most of the information provided by this service it tends to be text based, minimalist, but reasonably well written. The section on cot deaths is divided into Introduction, Causes, and Prevention. The Introduction gives the bare essentials on the number of cot deaths in the UK and points out that it is the biggest killer of infants over one month old. Moving on to Causes, this extremely brief section does little more than acknowledge that we don’t really know the causes of cot death although there does appear to be an association with certain risk factors. These are not really discussed in detail here; that is left until the final section on Prevention. This is undoubtedly the best part of this web site. The information is presented in a clear way with the emphasis on practical things parents can do to minimize the risk of cot death in their own babies. There seems to be great weight attached to the importance of not smoking, certainly more so than in other web sites. Another item that appears unique to this web site is the suggestion that babies who use dummies are far less likely to be victims of cot death, 92 per cent less likely to be precise. It seems strange that such a remarkable reduction in the likelihood of cot death by simply using a dummy hasn’t been reported elsewhere.

Not the best web site available, but it summarises the main points well and presents them in a clear and concise way.