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On My Mind
May 2015

Hearing Others’ Perspectives When We Hear, “Do Everything!”

Author Affiliations
  • 1School of Medicine, Department of Medicine, University of Missouri–Kansas City, Truman Medical Center
  • 2Department of Pediatrics, University of Missouri–Kansas City, Children’s Mercy Hospital
  • 3School of Medicine, Department of Pediatrics, University of Missouri–Kansas City
  • 4Division of Neonatology and Bioethics Center, Children’s Mercy Hospital, Kansas City, Missouri
JAMA Pediatr. 2015;169(5):423-424. doi:10.1001/jamapediatrics.2014.3699

I watch you hold her tiny, limp hand. She does not wrap her fingers around yours like babies her age would do. You run your hand over her wispy hair, but she does not look at you. She does not smile. A day has never passed that you have seen her whole face, absent tubes and tape. She is not normal, she is not healthy, and she never will be.

We have spent the past 5 months ordering tests, consulting the experts, and trying new medications. We have spent hours talking to you, explaining to you the prognosis, the options, and the plan. I know you have done your own research and spoken to your own consultants and even other parents whose children have the same disease. You are educated, dedicated, unyielding, and fierce. You are her mother.

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