Foreword

Résumé fourni par la source

The history of modern paediatrics is—in many ways—a triumph. Medical, surgical, and technological advances have increased survival for so many conditions that were previously lethal in infancy. However, this success has also brought new challenges for children and families and the clinicians who support them, as improvement in mortality has frequently been accompanied by new morbidities. Some of these new clinical realities are a direct result of improved survivorship among those infants born with conditions that lead to severe neurological impairment (SNI), like a congenital brain anomaly, while others are a consequence of measures to save the lives of infants or children with other life-threatening conditions, like the neurodevelopmental sequelae of complex cardiac anomalies or a central nervous system malignancy that leads to SNI. While the aetiology of SNI may differ substantially across individual children, those children who experience SNI share much in common. They share similar comorbidities, similar assistance from technological devices, similar reliance on intensive caregiver support, and similar medical fragility—the consistent worry that the next perturbation in their physiology from something as ‘minor’ as a viral upper respiratory infection will threaten their life. And, perhaps most troublesome, these children exist in a medical system that is increasingly fragmented, and not designed to provide the holistic care that they need and deserve.

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