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Last year I cared for Jamesi, an infant who had been born extremely prematurely. James was very sick in the first week or two of life, but had recovered and convalesced over the ensuing months. He was due to be discharged from hospital in the near future. One morning, when the medical team came to his bedside to review him, we found that he unexpectedly looked extremely unwell and was having difficulty breathing. Only half an hour previously he had seemed fine. James was whisked to the intensive care unit. He was intubated, resuscitated aggressively and received broad-spectrum antibiotics. Later that morning X-rays revealed what we had feared, evidence of widespread necrotising enterocolitis (NEC).
NEC is the great nemesis of neonatologists. It is a cruel, devastating disease that, in its most severe form, can strike without warning, taking well, growing infants and transforming them overnight into a mottled, bloated, moribund state. About 1/3 of newborn infants who require surgery for NEC die.1 When James subsequently had surgery, his entire bowel was found to be blackened and gangrenous in appearance; within a frighteningly short period of time, this severe infection had led to necrosis of his whole intestine.
In the past, this would have unquestionably been the end of the road for James. With no functioning intestine, his parents would have been counselled that sadly nothing more could be done to save him, that it was time to focus on his comfort and to provide palliative care. Life support would be withdrawn and James would likely die soon afterwards. Although this is dreadful news for medical staff to convey, and a dreadful situation for parents to face, it is, at least, mercifully unambiguous. However, recent surgical advances have raised the possibility of therapy for infants like James.2 …
Funding DW was supported for this work by an early career fellowship from the Australian National Health and Medical Research Council .
Competing interests None.
Provenance and peer review Commissioned; internally peer reviewed.
↵i This is a composite case. Names and details have been changed.
- Clinical ethics
- The concise argument
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