The Lullaby Trust was originally formed as The Foundation for the Study of Infant Deaths (FSID). Following the death of baby Martin Charles de Selincourt on 30 May 1969, the organisation was founded by Martin’s grandmother Nancy Hunter-Gray. She was unable to accept the sudden, inexplicable death of her healthy grandson and gave Professor Francis E Camps £200 to hold a two-day Symposium at Addenbrooke’s Hospital, Cambridge in April 1970.
The Infant Home Surveillance Research project starts, which will go on to become the Care of Next Infant (CONI) programme. The programme supports families who have experienced a sudden and unexpected death of a baby before and after the birth of their new baby. CONI has supported more than 20,000 families and over 23,000 babies on the programme.
This year saw the start of Befriending with the launch of the Befriender Training Day. Our Befrienders are parents, grandparents, adult siblings and adult family members who feel the time may be right to offer support to other families after their own bereavement.
FSID began to fund a number of projects that looked at the effect of temperature on babies, which formed the basis of our guidance around room temperature and the risks of overheating.
FSID funded research that created a scoring system for baby illness, to help parents and carers assess their baby’s symptoms. This led to the launch of the Baby Check booklet and app.
The launch of the FSID Helpline. Today, the Helpline offers confidential support to anyone affected by the sudden and unexpected death of a baby or young child. This support is there whenever it is needed, whether the death was recent or many years ago. It is available for families, friends, carers and professionals. We also offer support and advice to parents, carers and professionals around safer sleep.
In this year, FSID also funded a vital project that dispelled concerns around toxic gasses and baby mattresses.
The Reduce the Risk of Cot Death campaign was launched. The charity joined forces with daytime TV star Anne Diamond, who sadly lost her son to SIDS, and the Department of Health, to launch the Back to Sleep campaign, a national multimedia campaign to warn parents that babies should sleep on their backs. The campaign was a huge success.
FSID contributed funding to the Confidential Enquiry into Stillbirth and Death in Infancy (CESDI) Study. It was the largest UK study, with data collected between 1993 and 1996 and included over 300 SIDS cases compared to over 1200 controls. It is still widely used today.
FSID planned and convened the first meeting of UK baby charities. In 2003, it became a registered charity in its own right, the Association of Baby Charities.
FSID funded research that highlighted the effects of smoking and contributed to the Keeping Baby Smoke Free guidance. It also funded research that focussed on infant sleep practices including bedsharing and co-sleeping for single babies as well as multiples.
FSID’s publication ‘BabyZone’ won the British Medical Association’s award for ‘Best Patient Information Booklet’.
FSID initiated a helpline, delivered by Befrienders, who would divert the telephone into their own homes from 6-11pm every evening to support bereaved families.
FSID contributed funding to the South West Infant Sleep Scene (SWISS), a study conducted between January 2003 and December 2006, looking at all sudden unexpected deaths in infancy in the South West of England. The main focus was on potentially hazardous sleeping environments and the findings, along with those from the CESDI study are reflected in our safer sleep advice.
FSID funded a project that aimed to understand ethnic variation in infant care practices. This was crucial in determining the need for public health interventions targeted towards multicultural populations and contextualising health promotion and risk prevention strategies.
FSID funded research that led to car seat guidance in relation to the risks associated with SIDS.
The launch of Family Days for families affected by SIDS. Over the years, The Lullaby Trust has organised many free Family Days every year for bereaved families. They are held across England, Wales and Northern Ireland at family-friendly venues.
The Foundation for the Study of Infant Deaths (FSID) changed its name to The Lullaby Trust; this aimed to evoke a softer, warmer image, which helped us connect with bereaved families and reach a wider audience with our safer sleep advice.
The launch of Bubbalicious, a Lullaby Trust project aimed at young parents, which later became Little Lullaby. Little Lullaby was created in response to the increased risk of babies born to mums under 20, dying of SIDS. Little Lullaby was formed to connect with young parents, and highlight the challenges they face. Its aim is to stop all unexpected deaths of babies and toddlers born to young parents and to help them feel better informed about sleeping their babies safely.
The Lullaby Trust freephone Helpline and Information Line were launched.
The beginning of The Lullaby Trust’s Safer Sleep Week. This is our national awareness campaign targeted at anyone looking after a young baby. It aims to raise awareness of sudden infant death syndrome and the safer sleep advice that reduces the risk of it occurring. We know that greater awareness of safer sleep leads to a decrease in the numbers of babies dying.
The All-Party Parliamentary Group (APPG) on Baby Loss was launched ‘Beyond Awareness to Action: Tackling baby loss in the UK’. Its vision document set out the APPG’s goals for preventing and reducing baby loss, as well as improving the quality of bereavement care and support offered to parents.
The Global Action and Prioritisation of Sudden Infant Death project was set up to define which areas of research should be prioritised, by the international research community and policy makers, in order to reduce the number of deaths.
Little Lullaby won the Children and Youth award at The Charity Awards, an annual awards programme held to identify, recognise and reward those organisations doing exceptional work in all areas of charitable activity.
We launched a new Facebook bereavement support group offering peer to peer support. This is a closed group and membership is open to all bereaved families who have experienced the death of a baby or young child. Members are able to find support amongst other families who have been through the sudden and unexpected death of a baby or young child. The group is proving extremely popular and we currently have over 600 members.
Little Lullaby fronted their first Safer Sleep Week campaign focussing on products. Discussion with the Little Lullaby Young Parent Panel found that there was significant confusion and anxiety around baby products, which made it difficult to navigate and establish what a baby really needs. The result was an easy to use product guide that highlighted to all parents what are safer sleep essentials and what is not needed.
We introduced a Webchat bereavement support service. Webchat allows bereaved families to access one-to-one support without having to schedule a phone call. This also ensures accessibility of our service to bereaved families, especially those families who may struggle to make a call from home.
Our Instagram account was relaunched, providing families with safer sleep guidance and just over a year later the account hit 40,000 followers!