Julianna Snow made the heartbreaking decision last year to go to heaven. The 5-year-old from Portland, Oregon with an incurable neurological disorder was given the choice by her parents to either return to the hospital or stay home and go to heaven. CNN published the first part of a two-part series on Tuesday about whether or not Julianna Snow’s parents should have let her make an end-of-life decision, according to Syracuse.com on Wednesday.
Doctors reportedly told Julianna Snow’s parents, Steve Snow and Michelle Moon, that every trip to the hospital would make Julianna weaker. Julianna suffers from Charcot-Marie-Tooth, an inherited neurological disease that affects her ability to walk, breathe and eat. Julianna inherited the disease from her father, who has a mild case of CMT. Unfortunately, Julianna Snow has a more severe case of the disease that has kept her in and out of the hospital since the age of two.
Charcot-Marie-Tooth has rapidly weakened Julianna Snow’s muscles and attacked her nerves for the last five years. Dr. Michael Shy at the University of Iowa diagnosed Julianna with CMT just after she turned two in the fall of 2012. Shortly after that, Julianna was admitted to the hospital with what was thought to have been just a bad cold. But the CMT had attacked Julianna Snow’s breathing muscles to the point where she now needs to always wear a pressurized mask to help her breathe.
Every cold or infection could quickly turn into pneumonia and doctors say they would unlikely be able to save Julianna’s life. So, in the fall of 2014, Julianna Snow’s parents gave the then 4-year-old girl the choice to either go back to the hospital or stay home the next time she became ill. According to CNN, Michelle decided to have a conversation with Julianna about heaven, saying “Julianna, if you get sick again, do you want to go to the hospital again or stay home even if that means that you will go to heaven?” Julianna replied, “Not the hospital.”
Julianna’s choice to stay home was no surprise to Steve Snow and Michelle Moon, since she often told her parents how much she hated the hospital. Michelle made sure Julianna understood that she would be going to heaven alone. Said Michelle, “My daughter was telling me that getting more time at home with her family was not worth the pain of going to the hospital again.” Julianna Snow’s own doctors support her decision. However, the medical community is unsure that Julianna really understands the concept of death. “That kind of thinking doesn’t really develop until around age 9 or 10,” according to Dr. Art Caplan with the Division of Medical Ethics at New York University’s Langone Medical Center.
Steve Snow and Michelle Moon say they view their decision to give Julianna the choice to live or die as an act of love, because only Julianna Snow knows what it’s like to live as Julianna Snow with a progressive neuromuscular disorder.