The Lullaby Trust

Safer Sleep for Babies in Essex

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

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.

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.

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.

Sudden Infant Deaths per 1,000 live births:1989-2011

England & Wales, birth to 12 months (unascertained deaths included from 1997 onwards)

Source: Office of National Statistics (ONS) 2013

Sudden infant death around the country, 2009-2011England and Wales

Source: ONS 2013

Rate of death by age of mother, 2011England and Wales

Source: ONS 2013

• 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

Unexplained infant deaths* in England and Wales 2011

Why this baby?

SIDS

Baby usually aged up to 6 months

Vulnerable baby? Risk factors

Source: Filiana and Kinney 1994

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

Gestational age and the risk of SIDS

Gestation SIDS Controls OR (95 CI)

N=323 % N=1288 %

40+ weeks

112 34.7 730 56.7 1.00 (ref group)

37-39 weeks

148 45.8 488 37.9 1.86 (1.38-2.51)

36 weeks or less

63 19.5 70 5.4 5.07 (3.29-7.80)

Source: CESDI

Safer Sleep - Reducing the Risk

The most dangerous risk to take

• 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 Lullaby Trust Evidence Base (see www.lullabytrust.org.uk)**Fleming abstract from SIDSI conference 2008, p 59. 6% v 17%

Back to Sleep and Feet to Foot

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

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

Sleeping position for final or reference sleep

5.92-17.6810.23 39 3.047 14.8Front

1.62-2.952.19361 27.9129 40.7Side

Ref group1.00895 69.1141 44.5Back

No %No %Put down:

95% CIORControlsSIDS

Source: CESDI

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?

Smoking

8.41119 15.378 40.0YesSmoker

7.01 77 9.944 22.6NoSmoker

3.41163 20.940 20.5YesNon-smoker

1.00421 53.933 16.9NoNon-smoker

ORControlsNo %

SIDSNo %

Partner smoked

Mother smoked pregnancy

Source: CESDI and other studies

Smoking

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

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

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

Tommy’s “Baby be smoke free” website

Source: http://www.tommysbabybe.org.uk/main.php

Contact Numbers

Source: http://www.tommysbabybe.org.uk/main.php

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);

Infants’ sleeping environment

SIDSN=321(%)

ControlsN=1299(%)

Multivariate odds ratio

Room sharer 81 (25.2) 506 (39.0) 1.00

Solitary sleeper 114 (35.5) 420 (32.3) 10.49

Bed sharer put back in cot

24 (7.5) 178 (13.7) 0.67

Bed sharer at end of sleep

82 (25.5) 189 (14.5) 9.78

Sofa sharer 20 (6.2) 6 (0.5) 48.99

Source: CESDI

Bedsharing and small at birth(<37 weeks & or <2500g)

Small MOR Small MOR

By bed No 1.00 Yes 3.68

Co-sleep smokers No 9.11 Yes 37.41

Co-sleep non smokers No 1.12 Yes 15.18

Another room No 5.18 Yes 79.45

Source: Blair et al, 2006

Room and baby temperature

• Remember to always ensure that the baby is comfortable

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

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

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

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

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

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

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 AdvisorImperial Healthcare NHS Trust

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

Spot the 8 risks

The Lullaby Trust

When a Baby Dies

How can I help this family?

What is my role?

Social workers

Police

Pathol-ogists

Paedia-tricians

MidwivesHealth visitors

GPs

Coroners officers

Coroners

Child Protec-

tion

Para-medics

A&E

SUDI

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

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

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

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

“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

You may never know the value of the support you give but don’t let that stop

you from giving it

The Lullaby Trust

Support and Education

The Lullaby Trust Helpline

Contact with The Lullaby Trust:

2 Freephone helpline numbers –

personally answered

Bereavement Support : 0808 802 6868

support@lullabytrust.org.uk

Information Line: 0808 802 6869

info@lullabytrust.org.uk

The Lullaby Trust Helplines

• Both open every office day 10am-5pm

• Bereavement support line also open every weekend evening of the year and public holidays (manned by Helpline befrienders) 6pm-10pm

Befrienders

• Trained by The Lullaby Trust

• Supported by The Lullaby Trust

• Parents offered support by telephone, email and letter

New Publications

As part of our rebrand, many of our leaflets have been reviewed and these are now available for ordering:

– A parent guide giving the latest, research-based information on promoting “Safer sleep for babies”

– A separate “Easy Read” card, also available in other languages as a PDF from our website soon

– A guide for professionals, giving more background and research information

For Parents

UNICEF have confirmed that distribution of this guide “does not interfere with Baby Friendly Accreditation.”

For Parents

This card is fully endorsed by UNICEF

For Red Books in Essex

For supplies of this version, please contact Jan Levett at janet.levett@essex.gov.uk

For Professionals

Brand New Website

www.lullabytrust.org.uk

Online support In Memory and Discussion Group

www.lullabytrust.org.uk

Publications for bereaved families

Promoting Bereavement Support

• A new card available for families and professionals, giving details of how they can access our Bereavement support services.

• A dedicated freephone number for families and professionals to speak to a Helpline Adviser or a Befriender.

Care of Next Infant scheme (CONI)

“Trying to rear more children after one of your children has died is an overwhelming experience and I would not have got through it without CONI” A Coni Parent

Family Days

• Each region holds a free day out for bereaved families to meet and support each other

• Details of future events can be found on our website

It is vitally important to continue to promote the messages