For over 40 years, the Foundation for the Study of Infant Deaths (FSID) has been supporting parents who have experienced the tragedy of sudden infant death syndrome (SIDS), more commonly known as ‘cot death.’ This is the term given to apparently healthy babies who die without warning, but even after a thorough medical investigation, no cause for their death can be found.
In 1991, our campaign to ensure that babies slept on their backs helped to reduce the number of SIDS cases by 70%. Yet despite great success, sudden infant death is still with us, claiming the lives of five babies in the UK every week. The parent demographic has changed, and 74% of babies who die today are born into families experiencing a range of social and economic problems, together with high levels of smoking. Maternal smoking is a major risk factor for sudden infant death and mothers under 20, who are more likely to smoke during and after pregnancy, are now four times more likely to have a baby die suddenly and unexpectedly than those over 30.
However, research clearly shows that many of these infants could be saved if their parents followed our sleep safety advice. This is why the charity has undergone a transformation and is re-launching as The Lullaby Trust on 10 April, with a new set of resources for midwives and other health professionals who play a pivotal role in safe sleep education. We have pledged to halve the number of SIDS deaths by 2020.
FSID realised that it had to change after conducting a year-long consultation with our target ‘at risk’ groups which demonstrated that our current identity was hampering our ability to reach them. Our name in particular was a considerable barrier for teenage mothers, who were put off by references to ‘Death’ and ‘Foundation’ which they found ‘scary’ and off-putting. They told us that they would only look for help and advice from an organisation with a positive and much warmer name and image. We have worked hard to ensure that their feedback has shaped all our communications.
We now have a new freephone advice line (0808 802 6869) and free training opportunities for health professionals. The evidence base for our leaflet for midwives and health visitors has also been updated and we have designed a simple picture-based safer sleep card which gives clear reminders of the top pieces of ‘reduce the risk’ advice.
All of our resources can be downloaded for free from our website.
In addition to our re-launch we are also celebrating 25 years of our national bereaved parent support service the Care of Next Infant (CONI) programme, which we run in partnership with the NHS. CONI supports parents before and after the birth of a subsequent baby. The service is highly rated by families who are offered weekly or regular contacts at home with their health visitor, priority access to a paediatrician, a symptom diary, breathing movement monitor, weekly weighing and a room thermometer. All these elements provide significant comfort and reassurance during the frightening early months of their new baby’s life.
Although this is a health visitor-led intervention, midwives are crucial to the service and many referrals for support for bereaved, expectant mothers are made by their midwives.
The NHS is undergoing enormous change with decisions on health care provision being made at a local level. The Lullaby Trust is hoping to secure the future of the service by raising awareness that CONI prevents subsequent deaths and encourages vulnerable families to engage positively with other services.
I’d like to end by saying a big thank you because without the support of midwives the charity will not be able to deliver on our commitment to halve the number of babies who die suddenly and unexpectedly by 2020.The safer sleep advice that you give directly to their mothers is key to their survival.
Francine Bates, Chief Executive