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

Waite, Alison; Coombs, R C; McKenzie, Angela; Daman-Willems, C; Cohen, Marta C.; Campbell, Mike; Carpenter, R. G.

doi:10.1136/archdischild-2014-307232

Cited by 7 publications

(7 citation statements)

References 19 publications

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“…The overall death rate for ALTE (irrespective of the individual causes) is low (0.2-1.1%) and not connected to risk factors for SIDS [ 124 , 125 ].…”

Section: Query 11mentioning

confidence: 99%

Apparent Life-Threatening Events (ALTE): Italian guidelines

et al. 2017

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Five years after the first edition, we have revised and updated the guidelines, re-examining the queries and relative recommendations, expanding the issues addressed with the introduction of a new entity, recently proposed by the American Academy of Pediatrics: BRUE, an acronym for Brief Resolved Unexplained Events. In this manuscript we will use the term BRUE only to refer to mild, idiopathic cases rather than simply replace the acronym ALTE per se.In our guidelines the acronym ALTE is used for severe cases that are unexplainable after the first and second level examinations.Although the term ALTE can be used to describe the common symptoms at the onset, whenever the aetiology is ascertained, the final diagnosis may be better specified as seizures, gastroesophageal reflux, infection, arrhythmia, etc. Lastly, we have addressed the emerging problem of the so-called Sudden Unexpected Postnatal Collapse (SUPC), that might be considered as a severe ALTE occurring in the first week of life.

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“…The overall death rate for ALTE (irrespective of the individual causes) is low (0.2-1.1%) and not connected to risk factors for SIDS [ 124 , 125 ].…”

Section: Query 11mentioning

confidence: 99%

Apparent Life-Threatening Events (ALTE): Italian guidelines

et al. 2017

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“…During early postnatal life the laryngeal chemoreflex is modified, and neonates respond to the presence of water in the larynx with increased swallowing, bradycardia, apnoea, and little or no coughing, but by adult life the same stimulus generally elicits coughing and only a brief interruption of breathing. 2 Gastro-oesophageal reflux is also associated with sudden death. 69 Gastro-oesophageal reflux may trigger the laryngeal chemoreflex when gastric contents pool around the larynx.…”

Section: The Hippocampus Seizures and Apnoeamentioning

confidence: 99%

“…It is associated with apnoea and cyanosis and, with other feeding difficulties, forms the most common cause of apparent life-threatening event in infants. 2 Gastro-oesophageal reflux is also associated with sudden death. 71,72 It has been proposed that laryngeal chemoreflex may play a role in some cases of SIDS 35,52 ; 14% of SIDS cases have evidence of aspiration.…”

Section: Sensory Afferents From the Upper Airway: Oxygenconserving Rementioning

confidence: 99%

“…A further subgroup may be represented by infants who have had an apparent life-threatening event. 2 Sudden unexplained death in infancy, overall, is the most common cause of death in infants of 1 month to 1 year of age in the USA. 3 The cause of death in infants who die suddenly and unexpectedly in infancy remains a diagnostic challenge, despite many years of research.…”

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confidence: 99%

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Infants dying suddenly and unexpectedly share demographic features with infants who die with retinal and dural bleeding: a review of neural mechanisms

Squier

Mack

Jansen

2016

Develop Med Child Neuro

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The cause of death in infants who die suddenly and unexpectedly (sudden unexpected death in infancy [SUDI]) remains a diagnostic challenge. Some infants have identified diseases (explained SUDI); those without explanation are called sudden infant death syndrome (SIDS). Demographic data indicate subgroups among SUDI and SIDS cases, such as unsafe sleeping and apparent life-threatening events. Infants dying suddenly with retinal and dural bleeding are often classified as abused, but in many there is no evidence of trauma. Demographic features suggest that they may represent a further subgroup of SUDI. This review examines the neuropathological hypotheses to explain SIDS and highlights the interaction of infant oxygen-conserving reflexes with the brainstem networks considered responsible for SIDS. We consider sex- and age-specific vulnerabilities related to dural bleeding and how sensitization of the dural innervation by bleeding may influence these reflexes, potentially leading to collapse or even death after otherwise trivial insults.

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“…Arguably, these discussions could be left for specialist support services for subsequently born infants; however, not all families will choose to partake in such services, and in the UK Care of Next Infant (CONI) scheme, there have been several deaths in unsafe sleep environments reported. 29 …”

Section: Discussionmentioning

confidence: 99%

Parental understanding and self-blame following sudden infant death: a mixed-methods study of bereaved parents' and professionals' experiences

2016

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ObjectivesImprovements in our understanding of the role of modifiable risk factors for sudden infant death syndrome (SIDS) mean that previous reassurance to parents that these deaths were unpreventable may no longer be appropriate. This study aimed to learn of bereaved parents' and healthcare professionals' experiences of understanding causes of death following detailed sudden unexpected death in infancy (SUDI) investigations. The research questions were: How do bereaved parents understand the cause of death and risk factors identified during detailed investigation following a sudden unexpected infant death? What is the association between bereaved parents' mental health and this understanding? What are healthcare professionals' experiences of sharing such information with families?DesignThis was a mixed-methods study using a Framework Approach.SettingSpecialist paediatric services.ParticipantsBereaved parents were recruited following detailed multiagency SUDI investigations; 21/113 eligible families and 27 professionals participated giving theoretical saturation of data.Data collectionWe analysed case records from all agencies, interviewed professionals and invited parents to complete the Hospital Anxiety and Depression Scale (HADS) and questionnaires or in-depth interviews.ResultsNearly all bereaved parents were able to understand the cause of death and several SIDS parents had a good understanding of the relevant modifiable risk factors even when these related directly to their actions. Paediatricians worried that discussing risk factors with parents would result in parental self-blame and some deliberately avoided these discussions. Over half the families did not mention blame or blamed no one. The cause of death of the infants of these families varied. 3/21 mothers expressed overwhelming feelings of self-blame and had clinically significant scores on HADS.ConclusionsBereaved parents want detailed information about their child's death. Our study suggests parents want health professionals to explain the role of risk factors in SIDS. We found no evidence that sharing this information is a direct cause of parental self-blame.

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

Cited by 7 publications

References 19 publications

Apparent Life-Threatening Events (ALTE): Italian guidelines

Apparent Life-Threatening Events (ALTE): Italian guidelines

Infants dying suddenly and unexpectedly share demographic features with infants who die with retinal and dural bleeding: a review of neural mechanisms

Parental understanding and self-blame following sudden infant death: a mixed-methods study of bereaved parents' and professionals' experiences

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