The Lullaby Trust

1. The Lullaby Trust Safer Sleep for Babies in Essex

2. Our name change On 10 April 2013, The Foundation for the Study of Infant Deaths (“FSID”), became known as The Lullaby Trust.

3. Why the change ? 5 babies a week still die from sudden infant death. To achieve our aim of reducing this number by half by 2020, it was decided that we needed a warmer, more welcoming name, to make us more approachable. Months of research and consultation with families and professionals went into the name change. Much of the legal and design work was carried out either free of charge or at a greatly reduced rate, meaning that the rebrand has cost the Charity very little compared to rebrands of other companies. See our website www.lullabytrust.org.uk for a full set of FAQs.

4. The Lullaby Trust Strategy Our over-arching aim is to reduce the number of unexplained cot deaths to below 200 by 2015 and to halve it to 150 by 2020.

5. Definition of Sudden Infant Death Sudden Infant Death (sometimes known as “cot death”) is the sudden and unexpected death of a baby for no obvious reasons. The post-mortem examination may explain some deaths. Those that remain unexplained after post-mortem examination may be registered as sudden infant death syndrome (SIDS), sudden infant death, sudden unexpected death in infancy, unascertained or cot death.

6. Sudden Infant Deaths per 1,000 live births:1989-2011England & Wales, birth to 12 months (unascertained deaths included from 1997 onwards) Source: Office of National Statistics (ONS) 2013

7. Sudden infant death around the country, 2009-2011England and Wales Source: ONS 2013

8. Rate of death by age of mother, 2011England and Wales Source: ONS 2013

9. Unexplained infant deaths* in England and Wales 2011 • Boys accounted for 63% and Girls 37% of deaths • Lowest rate - London at 0.29 deaths per 1,000 • Highest rate - West Midlands at 0.41 deaths per 1,000 • 73% occurred in babies aged less than 4 months’ old • Low birthweight babies (less than 2,500 grams) were over 3 times more likely to die than babies born with a normal birthweight • Mothers under 20 were 2.6 times more likely to have a child die suddenly and unexpectedly • Since the launch of the Reduce the Risk campaign in England and Wales in 1991, the number of sudden infant deaths has fallen by around 65% *includes unascertained deaths

10. Why this baby? Baby usually aged up to 6 months SIDS Vulnerable baby? Risk factors Source: Filiana and Kinney 1994

11. What we know about SIDS families today: • Smokers – in 80% of SIDS cases, one or both parents is a smoker • Premature or low birth weight babies – 5 times more likely • Families living in deprived conditions – 80% of deaths • Young parents – 2.6 times more likely • All higher risk groups and all less likely to know and follow safe infant care practices

12. Gestationalage and the risk of SIDS Source: CESDI

13. Safer Sleep - Reducing the Risk

14. Never sleep on a sofa or armchair with a baby - this increases the risk by 50 times In England and Wales, 1 in 6 SIDS deaths involved co-sleeping with an adult on a sofa* 2 studies have shown an increased % of SIDS sofa deaths** The most dangerous risk to take * The Lullaby Trust Evidence Base (see www.lullabytrust.org.uk)**Fleming abstract from SIDSI conference 2008, p 59. 6% v 17%

15. Back to Sleep and Feet to Foot

16. Bedding • Covers should be up to shoulder level only and firmly tucked in. • A high proportion of infants who die are found with their head covered with bedding*. • Babies do not need to wear hats indoors. *The Lullaby Trust Evidence Base

17. Baby sleep bags • Use correct size for weight of baby • Use correct bag for time of year (seasonal tog ratings available) • Do not add any blankets on top

18. SIDS Controls OR 95% CI Put down: No % No % Back 141 44.5 895 69.1 1.00 Ref group Side 129 40.7 361 27.9 2.19 1.62-2.95 Front 47 14.8 39 3.0 10.23 5.92-17.68 Sleeping position for final or reference sleep Source: CESDI

19. Babies are still being slept prone • 14% of The Lullaby Trust’s survey sometimes still slept their baby prone • 71% slept their baby prone because the baby seemed to like it better – the race to get a baby sleeping through the night?

20. Mother smoked pregnancy Partner smoked SIDS No % Controls No % OR Non-smoker No 33 16.9 421 53.9 1.00 Non-smoker Yes 40 20.5 163 20.9 3.41 Smoker No 44 22.6 77 9.9 7.01 Smoker Yes 78 40.0 119 15.3 8.41 Smoking Source: CESDI and other studies

21. Smoking

22. 70% of parents are not aware of the extent of cot death risk posed by smoking in their home Source: The Lullaby Trust Survey, Jan 2007

23. Over 100 babies a year could be saved if no pregnant woman smoked

24. What can we do - Signposting ? • You can give pregnant women who smoke the best chance of stopping by putting them in touch with the local stop smoking service

25. Tommy’s “Baby be smoke free” website Source: http://www.tommysbabybe.org.uk/main.php

26. Contact Numbers Source: http://www.tommysbabybe.org.uk/main.php

27. The safest place for a baby to sleep is in a cot in your room for the first 6 months If you share a bed with your baby the risks are particularly increased if you or your partner: • are smokers (no matter where or when you smoke and even if you never smoke in bed); • have recently drunk alcohol; • have taken medication or drugs that make you sleep more heavily; • are very tired. OR • If your baby was born premature (born before 37 weeks); • was low birth weight (less than 2.5kg or 5.5 lbs);

28. Infants’ sleeping environment Source: CESDI

29. Bedsharing and small at birth(<37 weeks & or <2500g) Source: Blair et al, 2006

30. Room and baby temperature • Remember to always ensure that the baby is comfortable

31. Mattresses • Good condition, firm and fits the cot • Should have undamaged waterproof cover, thoroughly cleaned and dried before use • Ideally use a new mattress for each new baby

32. Swaddling Some people think swaddling young babies can help them settle or sleep. Whilst we do not advise for or against swaddling, we do urge parents to make sure they swaddle their baby in the safest way possible. If you decide to swaddle your baby make sure you use lightweight materials and do not cover their head. Never put them to sleep on their front, and make sure you keep checking their temperature so they do not get too hot. Source: The Lullaby Trust Evidence Base

33. Breastfeed your baby Babies who were at least partly breastfed were one-third less likely to die as a cot death than babies who were never breastfed Source: McVea et al, The role of breastfeeding in sudden infant death syndrome. J Hum Lact. 2000; 16: 13-20

34. Dummies • Using a dummy can reduce the risk of cot death • Use after breastfeeding is established • Gently withdraw the dummy from 6 months and by 12 months • Use when settling baby to sleep • Should be routinely given for every sleep period

35. Meta-analysis of ‘last sleep’ dummy use and the incidence of SIDS Source: Hauck FR et al (2005) Do pacifiers reduce the risk of sudden infant death syndrome? A meta-analysis Pediatrics 116: e716-e723

36. Breastfeeding and dummies • Dummy use is more likely to be a consequence of breast feeding difficulties than a cause of them - from research by Kramer et al, Jama., 2001. • Any effect on breastfeeding up to at least 6 months is minimal at best – Howard et al, Pediatrics 1999;103 • Only introduce a dummy after breastfeeding is established – 1 month guideline

37. Does dummy use have an adverse effect on speech and language development? They are frequently used by speech and language therapists for special groups of infants: Infants with dysphagia Preterm infants on prolonged tube feeding There are anxieties about the possible impact on normal speech and swallowing development if use is very prolonged No evidence of adverse effect on these processes of use for less than one year Source: Annie Aloysius,RCSLT Paediatric Dysphagia Advisor Imperial Healthcare NHS Trust

38. Risks not causes We still don’t know WHY these babies die Many parents don’t follow all the advice and their babies don’t die – why? Triple risk theory – external factors plus a baby’s vulnerability come together at crucial points Crossing the road – risk versus cause

39. Spot the 8 risks

40. The Lullaby Trust When a Baby Dies

41. How can I help this family? What is my role?

43. Your contact with a bereaved family Why are you contacting the family? What do they need from you, as a professional? Are you informed about the family, the baby and their needs? Keep an open mind – risks are not causes Parents need you to do your job, with sensitivity

44. Important for parents to: Have time to say the last goodbyes Choose mementos – photograph, hand and foot prints, lock of hair Have their baby’s name used Be informed Have someone thinking about the whole family – other children and grandparents Have the opportunity to see their baby again before the funeral

45. Parents need ongoing contact An explanation of what has happened/is being done with their baby To know of any clinical or other findings as they are made To have information about what happens next To participate in decision making as far as possible

46. The effect of a caring approach “He just knelt on the floor beside me and took my hand.” “He looked really upset. It sounds awful but I was so pleased that he really seemed to care.” “He said I could go back anytime I wanted. I haven’t yet but it is good to know I can.” Comments from bereaved parents

47. “Do not be afraid to show that you are a human being and have emotions. Show sympathy and empathy but do not say ‘I can understand what you are going through’, none of us can possibly understand the feelings that parents are experiencing.” DI Norman Inniss

48. You may never know the value of the support you give but don’t let that stop you from giving it

49. The Lullaby Trust Support and Education

50. The Lullaby Trust Helpline Contact with The Lullaby Trust: 2 Freephone helpline numbers – personally answeredBereavement Support : 0808 802 6868support@lullabytrust.org.ukInformation Line: 0808 802 6869info@lullabytrust.org.uk