Parents to honor 5-year-old daughter's decision of 'heaven' over 'hospital'

An Oregon family is allowing their terminally ill five-year-old daughter to make the decision of whether she wants to go to the hospital next time she is sick or stay at home and potentially die.

Julianna Snow, who has a neurodegenerative disease called Charcot-Marie-Tooth disease, which has caused her to become so weak that even a minor cold could become pneumonia, told her mother that she would rather go to "heaven," according to CNN.

It's unlikely that Julianna's doctors could save her life if she becomes ill again, and if they can, she would likely be sedated and on a respirator for the rest of her life, the news organization reported.

In May, Julianna's mother, Michelle Moon, shared the family's story on The Mighty, a digital platform for people facing disease and disability.

With the grim knowledge of what Julianna's future could look like, her parents decided to offer her a choice.

"Julianna made it clear to us that she does not want to go to the hospital again," Moon wrote of her then 4-year-old daughter. "Like so many kids who have had to face life-threatening illness, she is wise beyond her years — but she is still only four years old."

In the post, Moon recounts a conversation she had with her daughter about whether she wanted to go to the hospital for treatment next time she was sick or stay home and face the possibility of death:

Moon: You don't want to go to the hospital, right, J?
Julianna: I don't like NT [naso-tracheal suction, the thing she hated the most from the hospital].
Moon: I know. So if you get sick again, you want to stay home?
Julianna: I hate NT. I hate the hospital.
Moon: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
Julianna: (nods)
Moon: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
Julianna: But I won't be alone.
Moon: That's right. You will not be alone.

In the post, Julianna asks whether her brother will join her in heaven, and Moon tells her that most of the time people have to go to heaven alone and wait on their family to join them later.

The post received a mixed response with some voicing their support for Julianna's parent's choice and others questioning their decision.

"Unbelievable that any parent would think a four-year-old is able to understand or make a decision on life," Susan Timko wrote in the comments section. "Clearly that mother asks her leading questions. This article sickens me. I have a child with a chronic illness as well."

Following the criticism, Moon posted a second piece explaining her decision. She said it was heartbreaking for her and her husband to contemplate life without their child. She said her first instinct was to continue taking Julianna to the hospital, but they decided to honor Julianna's decision instead.

"We have had more conversations, mostly initiated by Julianna," Moon wrote. "She's scared of dying, but has, to me, demonstrated adequate knowledge of what death is. She hasn't changed her mind about going back to the hospital, and she knows that this means she'll go to heaven by herself. If she gets sick, we'll ask her again, and we'll honor her wishes."

And while Julianna's doctors support her parent's decision to honor their child's wish, not everyone thinks a child can make the call between life and death, CNN reported.

"This doesn't sit well with me. It makes me nervous," Art Caplan, the founding director of the Division of Medical Ethics at New York University, told CNN. "I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there's zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn't really develop until around age nine or 10."

Moon said it's been a year since Julianna's had an infection, and for now she is just enjoying time with her daughter. She told CNN they will make a decision on how to proceed when Julianna becomes ill again.

Initial efforts by USA TODAY Network to reach out to the family for more information have proved unsuccessful.

Follow @MaryBowerman on Twitter.