Recurrent sudden unexpected death in infancy: a case series of sibling deaths.

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.

Mortality of babies enrolled in a community-based support programme: CONI PLUS (Care of Next Infant Plus).

OBJECTIVE: To report mortality in babies enrolled on a community-based programme, Care of Next Infant Plus (CONI PLUS), which primarily supports parents anxious because of previous sudden unexpected death in infancy (SUDI) in their extended family or following an apparent life threatening event (ALTE) in their baby. DESIGN: Prospective observational study from 1996 to 2010 in the UK. RESULTS: Of 6487 babies enrolled, 37 died (5.7 per 1000). There were 2789 (43.0%) SUDI related babies of whom, six died suddenly and unexpectedly (2.15 per 1000). Four babies were sharing a sofa at night or a bed with parent(s) who smoked or had consumed alcohol. Of the 1882 (29.0%) babies enrolled following an ALTE, five died suddenly and unexpectedly (2.66 per 1000): four unexplained and one due to infection. None occurred while sharing a sleep surface, and at least three died during the day. The remaining 1816 (28%) babies were enrolled for other reasons. Seven died suddenly and unexpectedly (3.85 per 1000), two were unexplained and none associated with bed sharing. CONCLUSIONS: The number of SUDI deaths in babies enrolled on CONI PLUS is higher than expected from UK averages. Deaths in babies enrolled because of family history of SUDI were mostly associated with inappropriate sharing of a sleep surface at night and mostly outside the peak age range for sudden infant death. The opposite is true for those enrolled following an ALTE. The number of deaths is small but findings suggest a different mechanism for death in these two groups.

CONI: confirmation of continuing relevance after 20 years.

The Care of Next Infant (CONI) programme is offered through health services to provide extra support to families with babies born following a cot death. Audit of centrally collected data about families registered with the programme and feedback from parents show that compared with national data, families on CONI have more factors associated with an increased risk of cot death, confirming that a history of cot death identifies a particularly high-risk group. The programme, first offered to parents in 1988, remains attractive and helpful to parents in the 21st century. The CONI programme, including provision of a movement monitor, enables health visitors to deliver a targeted programme of extra care to a vulnerable group of babies.