Peter S Blair, Reader in Medical Statistics, University of Bristol
Andrew Ewer, Professor of Neonatal Medicine, Birmingham Women’s Hospital
Marta Cohen, Paediatric Pathologist, Sheffield Children’s Hospital
Daniel Rubens, Anaesthesiologist at Seattle Children’s Hospital and Research Institute
Peter Fleming, Consultant Paediatrician, University Hospitals Bristol, Professor of Infant Health and Developmental Physiology, Bristol University
Although the numbers of babies dying as a result of sudden infant death syndrome (SIDS) has fallen considerably in recent years, SIDS remains the largest single group of infant deaths after the first weeks of life. Unexpected deaths of older children are very rare, and it is important that we learn as much as possible to try to understand how we may be able to help prevent such deaths in the future.
In 2017, The Lullaby Trust is very proud to be funding an innovative new study which could lead to identifying babies and young children at risk of sudden unexpected deaths, by examining data from the newborn hearing screen test. If the results of this initial study prove conclusive, this could have potentially ground-breaking implications for prevention of SIDS and unexpected deaths of older children in the future.
A study conducted in the USA in 2007 showed differences in the newborn hearing test results of babies who subsequently died as SIDS compared to babies who didn’t. These results need to be confirmed with UK data but one possibility is that these differences are signalling an injury to the brainstem, which may lead to abnormalities of the control of breathing, temperature control or blood pressure.
If the US study is correct, it may be possible to identify a proportion of the infants or young children at high risk of unexpected death, offering the possibility of advice and / or monitoring that may prevent some of these deaths.
The Lullaby Trust is supporting this pioneering research, led by Professor Peter Fleming whose career has been dedicated to reducing unexpected deaths in infants and children. We would like to speak with any family whose baby or young child (up to and including the age of 4 years) died suddenly and unexpectedly after the 1st Janury 2010.
The reason for this cut-off date is because universal newborn hearing screening was introduced from the beginning of 2007, and from 2010 a standardised approach to the investigation of all child deaths and the collection of information was introduced in England. Therefore all the necessary records should be available for babies and young children who died after that time.
With your consent, we would like to talk to you about your experiences and about your baby who died. We would also like to access your baby’s newborn hearing screening test results and information that was provided to the coroner’s inquest by the child death review process. In order to achieve maximum impact we are hoping to speak to over 180 families.
The Lullaby Trust would like to speak confidentially to any family who might be interested in contributing to this research whose baby or young child died suddenly and unexpectedly after the 1st January 2010. Ultimately, we are looking for parents to come forward and be willing to talk to a trained and understanding research team and your consent to obtain your baby’s written records. Please call Jenny Ward at The Lullaby Trust on 020 7802 3221 if you would like to be part of this important research.