Background and aim Not all babies from whom neonatal intensive care (IC) is withdrawn die swiftly.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Retrospective review of the medical notes of infants cared for in our NICUs in the period 1/7/06 to 31/12/13 who had IC withdrawn but who unexpectedly survived for ≥1 week.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 IC was withdrawn with parental agreement at median 5 days postnatal age (range: 1–9 days).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.