An Oregon couple is allowing their 5-year-old daughter to decide whether to seek more medical treatment or to “go to heaven.”
Julianna Snow has a terminal neuromuscular illness called Charcot-Marie-Tooth disease, which first robbed her of the ability to walk and use her arms and now has targeted the muscles that control her breathing.
Her mother, Michelle Moon, wrote about her daughter’s condition this past summer, noting that Juliana spent 63 days in the pediatric intensive care unit in 2014.
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The young girl, who is now in hospice care, hates the hospital and particularly the NT (naso-tracheal suction), a treatment which involves putting a tube down her throat to facilitate breathing.
Juliana’s parents have promised her that when she goes to heaven, she will be able to play and run again and eat without a tube.
Doctors have informed the parents that the CT treatments will soon not be enough to help Juliana. “The next step would be tracheotomy and ventilator dependence. I can’t get into the agony of contemplating this question in this space,” Michelle wrote. “Though we didn’t need to make a decision immediately, my husband and I agreed that it would probably not be the right choice for Julianna.”
Physicians have also told the couple that their daughter’s next illness (even a common cold) may be her last, unless these measures are taken, which prompted the mother to have the following conversation with Juliana earlier this year.
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
J: not the hospital
M: Even if that means that you will go to heaven if you stay home?
M: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.
J: Don’t worry. God will take care of me.
M: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.
J: I understand.
M: (crying) – I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.
J: That’s OK. God will take care of me. He’s in my heart.
In a separate conversation, the mother gave her daughter assurance that she will not be alone in heaven.
J: Do some people go to heaven soon?
M: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.
J: Will Alex (her 6-year-old brother) go to heaven with me?
M: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?
J: No, heaven is good. But I don’t like dying.
M: I know. That’s the hard part. We don’t have to be afraid of dying because we believe we go to heaven. But it’s sad because I will miss you so much.
J: Don’t worry, I won’t be alone.
Fox News reports: “The family’s decision has…raised concern among some bioethicists, such as Art Caplan, of New York University, who argued to the Tribune Media Wire that children don’t understand death until age 9 or 10. ‘This doesn’t sit well with me,’ he told the wire service.”
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Michelle writes that she and her husband plan to honor their daughter’s wishes when the time comes. “We have had more conversations, mostly initiated by Julianna. She’s scared of dying, but has, to me, demonstrated adequate knowledge of what death is. (J: ‘When you die, you don’t do anything. You don’t think.’) 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.”
Do you think Juliana should be allowed to decide whether she lives? Please share your thoughts below.