on November 16th, 2015 No Comments
Today, NPR’s Morning Edition featured an in-depth story on the evolution of decision-making in neonatal intensive care units – hospital nurseries for the sickest infants. Parents now have much more say in their babies’ care than in the past, and Stanford experts who were on the front lines of the change, including William Benitz, MD, chief of neonatology at Lucile Packard Children’s Hospital Stanford, explained how it happened.
As medical care for premature and other at-risk babies advanced in the 1970s and early 1980s, doctors gained the ability to save many infants who would once have died soon after birth. But some children in the new category of survivors had lifelong disabilities, with lasting implications for them and their families.
At first, doctors did not realize that this change would affect parents’ desire to participate in planning medical decisions for fragile infants:
“It never occurred to anyone that that might be a reasonable conversation to have,” Benitz says. “We were in unexplored territory.”
As technology improved and doctors tried to save sicker babies, and some born even earlier in gestation, there were new decisions to make: Should the health team put the tiny child on a ventilator? Attempt heart surgery? Those interventions helped many infants survive. Others did not fare as well.
“A lot of them ended up with significant impairments,” Benitz recalls. And doctors started to get pushback. “In the mid-80s we began to hear from families that maybe that wasn’t consistent with their goals for their children.”
As a result, neonatologists began having in-depth conversations with parents about the possible outcomes of different treatments for their infants. The practice is now widespread, and it means a lot to parents like Karin and Chris Belluomini, whose daughter, Joy, was born in May 2015 with Down syndrome, several heart defects and fluid around her lungs.