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Recurrent sudden unexpected death in infancy: a case series of sibling deaths
  1. Joanna J Garstang1,2,
  2. Michael J Campbell3,
  3. Marta C Cohen4,5,
  4. Robert C Coombs6,
  5. Charlotte Daman Willems7,
  6. Angela McKenzie8,
  7. Angela Moore9,
  8. Alison Waite10
  1. 1 Children and Family Services, Birmingham Community Healthcare NHS Trust, Aston, UK
  2. 2 Institute for Applied Health Research, University of Birmingham, Birmingham, UK
  3. 3 School of Health and Related Research, University of Sheffield, Sheffield, UK
  4. 4 Department of Histopathology, Sheffield Children's Hospital NHS Foundation Trust, Sheffield, UK
  5. 5 Department of Oncology and Metabolism, University of Sheffield, Sheffield, UK
  6. 6 Sheffield Children's Hospital NHS Trust, Sheffield, UK
  7. 7 Lewisham and Greenwich NHS Trust, London, UK
  8. 8 Department of Medical Statistics, London School of Hygiene and Tropical Medicine, London, UK
  9. 9 Retired, Wolverhampton, UK
  10. 10 Retired, Retford, UK
  1. Correspondence to Dr Joanna J Garstang, Children and Family Services, Birmingham Community Healthcare NHS Trust, Aston, UK; joanna.garstang{at}nhs.net

Abstract

Objectives To determine the rate of sudden unexpected death in infancy (SUDI) for infants born after a previous SUDI in the same family, and to establish the causes of death and the frequency of child protection concerns in families with recurrent SUDI.

Design Observational study using clinical case records.

Setting The UK’s Care of Next Infant (CONI) programme, which provides additional care to families who have experienced SUDI with their subsequent children.

Patients Infants registered on CONI between January 2000 and December 2015.

Main outcome measures Cause of death, presence of modifiable risk factors for SUDI and child protection concerns.

Results There were 6608 live-born infants registered in CONI with 29 deaths. 26 families had 2 deaths, and 3 families had 3 deaths. The SUDI rate for infants born after one SUDI is 3.93 (95% CI 2.7 to 5.8) per 1000 live births. Cause of death was unexplained for 19 first and 15 CONI deaths. Accidental asphyxia accounted for 2 first and 6 CONI deaths; medical causes for 3 first and 4 CONI deaths; and homicide for 2 first and 4 CONI deaths. 10 families had child protection concerns.

Conclusions The SUDI rate for siblings is 10 times higher than the current UK SUDI rate. Homicide presenting as recurrent SUDI is very rare. Many parents continued to smoke and exposed infants to hazardous co-sleeping situations, with these directly leading to or contributing to the death of six siblings. SUDI parents need support to improve parenting skills and reduce risk to subsequent infants.

  • child abuse
  • SIDS
  • epidemiology
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Footnotes

  • Contributors JJG, CDW, AMo and AW contributed to study design. JJG, CDW, MJC, RCC, AMo, AMc and AW contributed to data collection and study implementation. JJG, AMo, CDW, MJC and AW did the analyses. JJG, CDW, AMo and AW wrote the manuscript.

  • Funding The study received no direct funding. The Lullaby Trust paid travel expenses and provided meeting facilities for the team working on this project. AW was funded by The Lullaby Trust as the national CONI coordinator between 1988 and 2015 and was employed by them in 2015–2018. AMc was funded by the Foundation for the Study of Infant Death/The Lullaby Trust from 1988 to 2013. The Lullaby Trust had no role in study design, data collection, data analysis, data interpretation or writing of the report. The corresponding author had full access to all data in the study and had final responsibility for the decision to submit for publication.

  • Competing interests All authors are members of the CONI national steering group managed by The Lullaby Trust. AW was funded by The Lullaby Trust as the national CONI coordinator from 1988 to 2015 and was employed by them from 2015 to 2018. AMc was funded by the Foundation for the Study of Infant Deaths/The Lullaby Trust between 1988 and 2013. All other authors received expenses only from The Lullaby Trust towards their CONI work but no salary. JJG has received research grants from the National Institute for Health Research (DRF 2010-0345).

  • Patient consent for publication Not required.

  • Ethics approval This is a long-standing service evaluation so it does not require ethical approval.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information. Data may be available from the authors on request.

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