With more than 20 years of experience as pediatric and adult critical care nurses, we have observed an increase in the number of medically complex children who are living into adulthood and a troubling lack of adult intensive care unit (ICU) systems and processes for these patients.

Medical advances have resulted in a significant decline in the mortality rate in the pediatric ICU (PICU), from 15% in 1980 to 4% in 2006. However, an unintended consequence is that more children experience significant morbidity. In fact, more than 50% of all PICU admissions are children with medical complexity.1,2  Families caring for a child who is chronically critically ill have special care requirements. Nurses in the PICU have extensive experience with pediatric-onset conditions such as congenital heart defects, sickle cell disease, neurodegenerative diseases, chromosomal abnormalities, and muscular dystrophies. They are also familiar with growth and development and have expertise...

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