Shared Decision Making
Decision-making over 14 months: Our goal was always for her to feel loved and be out of the hospital, at home, as much as possible.
Parents Casey and Brian talk about living into their daughter’s life as she continued to live and grow beyond expectations following a prenatal diagnosis of heterotaxy. They elect a first cardiac surgery; and a second surgery. They reflect on what it means to be cardiac parents … and prioritizing her life out of the hospital, not on the cardiac floor, and what that ultimately meant. “It’s OK we didn’t get the big miracle.”
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Decision-making over 14 months: Our goal was always for her to feel loved and be out of the hospital, at home, as much as possible.
“I don’t use the terminology of quality of life. It labels something that is very difficult to label.” A perinatal doctor on listening to what is in the parents’ heart and hearing where they are headed.
A life-limiting fetal diagnosis: Empowering but not burdening the parents as decision-makers.
Shared Decision-Making: When parents ask the doctor for a recommendation.
