5-Year-Old Suffering From Incurable Disease Chooses Heaven Over Hospital
Five-year-old Julianna Snow has an incurable neurodegenerative disorder since her birth, one that makes her visit hospitals frequently and prevents her from going to the City Bible Church in Portland, Oregon, where her family belongs.Advertisement
When Julianna was 4, her family told her that she could decide to remain in the hospital or go to heaven the next time she fell ill, Tribune Media Wire reports. Suffering from Charcot-Marie-Tooth disease (CMT), they said in heaven she would be able to do everything that children her age can. Julianna said she would want to go to heaven, and not the hospital.
She has become extremely weak over the course of her illness, so much so that she could potentially die from pneumonia the next time she catches a cold. Even if the doctors are able to save her, there is an undeniable possibility she will remain sedated on a respirator.
On The Mighty, a website where people post about issues surrounding deadly diseases, Moon wrote a conversation she had with her daughter.
“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?
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 another post, Moon wrote that her daughter understood what death is. She wrote in defense to the action that she and her husband had taken, saying, “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.”
The parents’ decision to let their daughter decide whether she wants to die or not has raised criticism from some bioethicists, as reported by Fox 59. Art Caplan, of New York University, said that children that young do not understand death. “This doesn’t sit well with me,” he said.
On the other hand, there are people who have shown support for Moon and Snow. Caplan’s former co-worker, Dr. Chris Feudtner, a pediatrician and ethicist at Children’s Hospital of Philadelphia, said, “To say her (Julianna’s) experience is irrelevant doesn’t make any sense. She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.|