The Lullaby Trust

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The Lullaby Trust
Safer Sleep for Babies in Essex
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Our name change
On 10 April 2013, The Foundation for the Study of
Infant Deaths (FSID), became known as The
Lullaby Trust.
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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.

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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.
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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.

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Sudden Infant Deaths per 1,000 live
births1989-2011England Wales, birth to 12
months

• (unascertained deaths included
  from 1997 onwards)

Source Office of National Statistics (ONS) 2013
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Sudden infant death around the country,
2009-2011England and Wales
Source ONS 2013
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Rate of death by age of mother, 2011England and
Wales
Source ONS 2013
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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

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

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Gestational age and the risk of SIDS
Gestation SIDS SIDS Controls Controls OR (95 CI)
Gestation N323 N1288 OR (95 CI)
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
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Safer Sleep - Reducing the Risk
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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
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Back to Sleep and Feet to Foot
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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
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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

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Sleeping position for final or reference sleep
Source CESDI
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Babies are still being slept prone

• 14 of The Lullaby Trusts 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?

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Smoking
Source CESDI and other studies
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Smoking
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• 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

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

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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

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Tommys Baby be smoke free website
Source http//www.tommysbabybe.org.uk/main.php
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Contact Numbers
Source http//www.tommysbabybe.org.uk/main.php
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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)

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Infants sleeping environment
SIDS N321() Controls N1299() 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
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Bedsharing and small at birth(lt37 weeks or
lt2500g)
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
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Room and baby temperature

• Remember to always ensure that the baby is
  comfortable

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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

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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
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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
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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

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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
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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 1999103
• Only introduce a dummy after breastfeeding is
  established 1 month guideline

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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
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Risks not causes

• We still dont know WHY these babies die
• Many parents dont follow all the advice and
  their babies dont die why?
• Triple risk theory external factors plus a
  babys vulnerability come together at crucial
  points
• Crossing the road risk versus cause

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Spot the 8 risks
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The Lullaby Trust
When a Baby Dies
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• How can I help this family?
• What is my role?

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(No Transcript)
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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

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Important for parents to

• Have time to say the last goodbyes
• Choose mementos photograph, hand and foot
  prints, lock of hair
• Have their babys 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

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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

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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
  havent yet but it is good to know I can.
• Comments from bereaved parents

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• 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

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• You may never know the value of the support you
  give but dont let that stop you from giving it

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The Lullaby Trust
Support and Education
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The Lullaby Trust Helpline

• Contact with The Lullaby Trust
• 2 Freephone helpline numbers personally
  answeredBereavement Support 0808 802
  6868support_at_lullabytrust.org.uk Information
  Line 0808 802 6869info_at_lullabytrust.org.uk

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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

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Befrienders

• Trained by The Lullaby Trust
• Supported by The Lullaby Trust
• Parents offered support by telephone, email and
  letter

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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

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For Parents
UNICEF have confirmed that distribution of this
guide does not interfere with Baby Friendly
Accreditation.
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For Parents
This card is fully endorsed by UNICEF
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For Red Books in Essex
For supplies of this version, please contact Jan
Levett at janet.levett_at_essex.gov.uk
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For Professionals
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Brand New Website
www.lullabytrust.org.uk
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Online support In Memory and Discussion Group
www.lullabytrust.org.uk
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Publications for bereaved families
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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.

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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

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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

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It is vitally important to continue to promote
the messages