University Hospital London NHS Trust
NHS / Health Body
Noted
The Trust investigated a survey of 'cot deaths' in unusual scenarios but it did not prove feasible due to data protection and consent issues. They suggest coroners liaise with clinicians working on sudden infant death and release data from existing child death reviews. (AI summary)
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Dear Sir
Although a couple of years ago I did investigate the possibility of doing a survey of ‘cot deaths’ in unusual scenarios such as slings and car seats, it did not prove feasible due to data protection and consent issues.
These events are very rare: among perinatal pathologists nobody had seen more than one or two (verbal communications). Because they are all Coroner cases, the pathologists could not supply any further data without the consent of each individual coroner, often going back several years. The data exists, in the form of the child death reports, but these are not available as a research resource, and the data is held locally and not collated.
Being so rare, any prospective collection of data would take many years, and further infants would die.
The way forward may be for the coroners to liaise with clinicians who are working on sudden infant death (ideally via FSIDS), and release whatever data is available from existing child death reviews.
Since the ‘back to sleep’ campaign, a subset of SUDI have been considered very likely to have been asphyxial – more investigation revealed that these are often associated with additional risk factors (e.g. sharing a sofa with a parent). What a review of deaths in slings and car seats might do is identify possible additional risk factors, such as the age of the baby or the design of the sling. Being so rare, no useful conclusions could be reached from the experience of one centre, even a very large one.
All we can say at present is that (very rarely) babies have died in carrying slings, and the information reaches the public via local inquest reports and the newspapers. Any progress would have to come from examination of child death review data. FSID is very interested in setting up a child death register for this reason, but is hampered by the same legal and consent issues as I was.
There is clearly scope for further work, but this is very peripheral to my own professional interests and experience. I was trying to match people up, but was never in a position to run my own study. The chief executive at FSID was certainly interested, but I don’t know how much progress she has been able to make. I’m happy to talk on the phone about this if you want to discuss matters further.
Although a couple of years ago I did investigate the possibility of doing a survey of ‘cot deaths’ in unusual scenarios such as slings and car seats, it did not prove feasible due to data protection and consent issues.
These events are very rare: among perinatal pathologists nobody had seen more than one or two (verbal communications). Because they are all Coroner cases, the pathologists could not supply any further data without the consent of each individual coroner, often going back several years. The data exists, in the form of the child death reports, but these are not available as a research resource, and the data is held locally and not collated.
Being so rare, any prospective collection of data would take many years, and further infants would die.
The way forward may be for the coroners to liaise with clinicians who are working on sudden infant death (ideally via FSIDS), and release whatever data is available from existing child death reviews.
Since the ‘back to sleep’ campaign, a subset of SUDI have been considered very likely to have been asphyxial – more investigation revealed that these are often associated with additional risk factors (e.g. sharing a sofa with a parent). What a review of deaths in slings and car seats might do is identify possible additional risk factors, such as the age of the baby or the design of the sling. Being so rare, no useful conclusions could be reached from the experience of one centre, even a very large one.
All we can say at present is that (very rarely) babies have died in carrying slings, and the information reaches the public via local inquest reports and the newspapers. Any progress would have to come from examination of child death review data. FSID is very interested in setting up a child death register for this reason, but is hampered by the same legal and consent issues as I was.
There is clearly scope for further work, but this is very peripheral to my own professional interests and experience. I was trying to match people up, but was never in a position to run my own study. The chief executive at FSID was certainly interested, but I don’t know how much progress she has been able to make. I’m happy to talk on the phone about this if you want to discuss matters further.