PS-228 The Babies Who Unexpectedly Survive Long-term After Withdrawal Of Neonatal Intensive Care

Title

PS-228 The Babies Who Unexpectedly Survive Long-term After Withdrawal Of Neonatal Intensive Care

Creator

Jones J; Job S; Pal S; Maynard L; Curley A; Clarke P

Publisher

Archives Of Disease In Childhood

Date

2014

Description

Background and aim Not all babies from whom neonatal intensive care (IC) is withdrawn die swiftly. We reviewed cases, characteristics, and outcomes of babies who unexpectedly survived for ≥1 week following IC withdrawal. Methods Retrospective review of the medical notes of infants cared for in our NICUs in the period 1/7/06 to 31/12/13 who had IC withdrawn but who unexpectedly survived for ≥1 week. Babies with trisomies were excluded. Our study had prior research ethics approval. Results We identified 9 long-term survivors (6 term, 3 preterm). 8 had a main diagnosis of grade 3 hypoxic ischaemic encephalopathy; 1 preterm infant had a diagnosis of myelomeningocele and hydrocephalus. All had abnormal neuroimaging prior to planned IC withdrawal. IC was withdrawn with parental agreement at median 5 days postnatal age (range: 1–9 days). The possibility of long-term survival had been broached by clinicians prior to IC withdrawal in only 2 of the 9 cases. Median age at discharge/transfer from NICU was 10 days (range: 1–31 days) and destination was home (n = 3) or hospice (n = 6). 4 infants died at ages ranging between 19–66 days. Yet remarkably, 5 infants remain alive to date with current ages ranging between 10 months and 5.3 years, but all have cerebral palsy. Conclusion Unexpected long-term survival after neonatal IC withdrawal is neither predictable nor uncommon. Significant disability in survivors is invariable. Even if protracted survival is considered very unlikely, the possibility should always be specifically mentioned during the sensitive discussions with parents that precede IC withdrawal.
2014-10

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Type

Journal Article

Citation List Month

Backlog

Pages

A196-A196

Volume

99

Citation

Jones J; Job S; Pal S; Maynard L; Curley A; Clarke P, “PS-228 The Babies Who Unexpectedly Survive Long-term After Withdrawal Of Neonatal Intensive Care,” Pediatric Palliative Care Library, accessed July 30, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14858.

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