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.
The couple wanted their doctors to try to save Joy, and they weren’t deterred by the prospect of raising a child with disabilities. But they also didn’t want their baby to suffer. After three weeks in the NICU, with Joy’s blood oxygen levels very low in spite of all the medical care she was getting, they made the hard choice to discontinue life support so that she could die peacefully in their arms. From the story:
Both parents say it was difficult to even imagine not being a part of such decisions.
“As a parent, you just want to do everything and anything to protect your child,” says Karin. “So to be able to really understand her condition and how it’s affecting her, and to know that we did have a say in that, was extremely important.”
“You kind of don’t want that responsibility,” adds Chris, “and would rather have someone say or do it for you. But in the end, I wouldn’t want it to have been any other way.”
Photo by The Hudson Family
- Erin Digitale
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