Every year around 17 toddlers over the age of one die suddenly and unexpectedly and no cause is ever found. Losing a child in this way is devastating to families and while a great deal of research has been carried out into Sudden Infant Death Syndrome (SIDS), which affects babies under one, there have previously been no major studies into sudden unexplained deaths of young children.
The study will be carried out at Great Ormond Street Hospital (GOSH), one of the world’s leading children’s hospitals and is led by Professor Neil Sebire, an international expert in the area of infant death research. Using the unique database developed by Great Ormond Street, the team will examine the details of over 3,500 paediatric post-mortem examinations, allowing them to compare sudden unexpected deaths with other groups of infant and child death.
The findings will provide new knowledge regarding what may cause seemingly healthy children to die suddenly and unexpectedly so that future cases may be prevented.
The Lullaby Trust has produced a video to raise awareness of sudden unexpected deaths of babies over one during Baby Loss Awareness Week and to share information about this ground breaking research.
Professor Neil Sebire says that by using the database to define the group of children who die without a cause of death being found:
“We can then start to understand what might be different about these children and to find clues as to what may have contributed to the death, with the aim of developing new tests to reduce the number of unexplained cases, and ultimately to prevent them from happening”.
A large amount of the money raised to fund the study came from the efforts of two families; the Richardsons who lost their son Alexander at 17 months and the Goodens who lost their son Rex at 21 months old. Nicola Richardson, mother of Alexander, who appears in the video says:
“No baby should die at all, ever, with no cause, and no parent or family should have to see on the death certificate, reason unexplained or open case. That’s not an answer, that doesn’t tell me why my child died.”
Camilla Gooden, mother to Rex who died in February 2015 at 21 months old says
“Helping to fund Professor Sebire’s study into the Sudden Unexpected Death of Over 1 year olds has enabled us as a couple to feel as if we are doing something positive, turning our inconceivable tragedy of losing our beloved Rex into something that in time will hopefully help make sense of sudden unexplained death so that it becomes predictable, treatable and most crucially preventable. Research into sudden unexpected death in childhood is rare and underfunded so Professor Sebire’s study is absolutely essential and we are so grateful to him and his team for all their hard work and dedication. We have no doubt their work is laying the foundations to finding the answers we all so desperately seek and that in time will unravel the mystery of sudden unexplained death in childhood.”
Francine Bates, Chief Executive of The Lullaby Trust says
“We are committed to reducing the numbers of babies who die suddenly and unexpectedlybut while research has shown us effective ways to reduce the risk of sudden unexplained death in infants under 12 months, there is no such knowledge that can help prevent the deaths of babies over one. This study covers new ground by looking at potential causes of why children over one die suddenly and unexpectedly. The hope is it will ultimately provide the knowledge needed to prevent these deaths and spare families from this terrible tragedy”
