Characteristics of babies who unexpectedly survive long term after withdrawal of intensive care

Abstract

Unexpected long-term survival after neonatal intensive care withdrawal occurs occasionally but unpredictably. Significant neurodevelopmental adversity was invariable in those surviving beyond infancy. Ventilator dependency along with severely abnormal electroencephalography and neuroimaging is still compatible with long-term survival. The possibility of protracted survival should be discussed routinely with parents before intensive care withdrawal.

A fetal diagnostic center’s referral rate for perinatal palliative care

“…This likely reflects the limitation of accurate prognostication based on prenatal data. Not surprisingly, we also have difficulty predicting death and neurodevelopmental impairment with postnatal information (17)(18)(19). Our reality is that we have imperfect means of predicting outcomes.…”

An uncertain future? Counselling and decision‐making around treatment withdrawal for newborn infants

“…'s paper raises the question of whether withdrawal of artificial nutrition and hydration (ANH) is an ethical option for infants with severe hypoxic–ischaemic encephalopathy (HIE). In their series, the prognosis for all infants was sufficiently poor that there was a clear judgment that it was acceptable to withdraw mechanical ventilation and to withhold resuscitative efforts if the infant were to subsequently arrest . All of the infants who survived were described to have very significant neurodevelopmental abnormalities .…”

“…In our own study, ¾ of infants were ‘physiologically stable’ at the time of discussions about treatment limitation . In the Cambridge study, five of the eight infants were minimally ventilated (in room air) or on noninvasive respiratory support . Another factor may be the timing of decisions: earlier treatment withdrawal may be associated with a higher chance of death in patients with brain injury .…”

“…Another factor may be the timing of decisions: earlier treatment withdrawal may be associated with a higher chance of death in patients with brain injury . The median time for treatment withdrawal in the Cambridge study was day 7 after birth . In our cohort, treatment limitations occurred earlier in infants who died (median day 1) than in infants who survived (median day 6, p < 0.001, unpublished data).…”

Highlights in this issue

“…Sanchita Pal et al describe eight UK infants with a severe hypoxic ischaemic brain injury who survived for a prolonged period of time after intensive care was withdrawn, following diagnosis, despite the clinicians’ belief that death was inevitable. Three died before three months of age and five, aged from two to 6.5 years, are alive but with significant neurodevelopmental sequelae.…”