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If your child was over a year old

The vast majority of babies who die suddenly and unexpectedly are under six months old. However, every year a very small number of older babies and young children also die suddenly and unexpectedly. If your child was over 12 months when they died, their death may be classified in several different ways, including ‘unascertained’ or possibly ‘SIDS’ if they were under 2 years of age. You may have been given an official cause of death but still feel that your child’s death has not been fully explained or understood.

Figures on the number of unexplained deaths in children aged over one are not as easy to identify as with SIDS. In 2013 the Office for National Statistics (ONS) show that there were a total of 18 deaths in England and Wales in children aged between one and two years that did not have a cause of death. Undoubtedly, 18 child deaths is 18 too many.

If you have experienced the sudden and unexpected death of a child over one year of age, regardless of the cause of death given, support is available. Volunteer parent befrienders who themselves have experienced the death of their toddler are here to talk. You can contact The Lullaby Trust on 0808 802 6868 or by emailing support@lullabytrust.org.uk

To find out more about current research into deaths in older babies and young children please see our research page

An organisation entirely devoted to Sudden Unexplained Death in Childhood (sometimes known as SUDC) is the SUDC Foundation: www.sudc.org. They provide information, advocacy, research and support services which are available to families all over the world who have experienced the sudden unexpected death of a child on or after their first birthday. Please visit www.sudc.org for more information.

Families may feel isolated and bewildered by such a rare tragedy. Nicola, mum to Alexander, writes: 

People are shocked and saddened when they hear my son died of Sudden Infant Death Syndrome or 'Cot Death' as most people know it, but they are even more alarmed when I tell them he was 17 months old.  I never knew it could happen over the age of 1 and had never even heard of healthy toddlers dying for no reason until it was my own.  Alexander was my youngest twin but he was a lively, cheeky little boy with a bright personality and an even bigger smile.  They came in a pair and shared private jokes between them.  They had their own personalities, starting to talk and imitate and just that week Alexander had learned to walk.  The last to be born but the first to achieve his milestones he was very proud of himself.

He wasn't a defenceless little baby so why did he die? I followed the rules and guidelines but I couldn't protect my little boy from dying in his sleep aged 17 months”.

To find out more about Nicola's story and to read about Alexander's 100K Challenge, please visit this page >>

Harrison and Alexander

bereavement support: 0808 802 6868
information & advice: 0808 802 6869

The Lullaby Trust

11 Belgrave Road
London SW1V 1RB

Office: 020 7802 3200
Registered Charity Number: 262191
Registered Company Number: 01000824

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