Julianna Snow of Portland, OR is 5 years old. She can't go to school, walk, or even eat. She spends her days in a wheelchair that she cannot push herself. At dinner with her family, her father, Steve Snow, gently rubs bites of whatever her brother and parents are eating against her lips so that she can have a taste. Julianna has Charcot-Marie-Tooth disease, a progressive, incurable neurodegenerative illness that affects the nerves outside the brain and spinal cord — and she's decided that the next time she has an infection, she won't return to the hospital. This will likely lead to her death. Something as simple as a cold could kill Julianna by developing into a severe case of pneumonia, and even if she were to survive such a case, her doctors say she'd likely remain sedated and tethered to a respirator for the rest of her life. Julianna's mother, Michelle Moon, shared on the blog The Mighty that Julianna was admitted to the intensive care unit for respiratory failure three times in 2014. Now, Michelle is speaking out about Julianna's decision not to go to the hospital the next time she becomes sick, though Julianna knows this means she will "probably go to heaven" instead. And Michelle and her husband Steve plan to respect that choice.
The next time she has an infection, she won't return to the hospital, which will likely lead to her death
The couple is speaking out about their daughter and her decision on CNN in the two-part series Heaven Over Hospital, in which Michelle shares the conversations she has had with Julianna about the future of her care. "Julianna, if you get sick again, do you want to go to the hospital again or stay home?" Michelle asked her daughter at one point. "Not the hospital," Julianna replied. "I hate NT [a breathing tube placed into the windpipe without sedation]. I hate the hospital." "So if you get sick again, you want to stay home," Michelle continued. "But you know that probably means you will go to heaven, right?" Julianna answered, as she has answered many times, that she understood. "She made it clear that she doesn't want to go through the hospital again," Michelle told CNN. "So we had to let go of that plan, because it was selfish."
So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
End-of-life rights attracted international attention late last year when 29-year-old brain cancer patient Brittany Maynard publicly announced her decision to move from California to Oregon, a state that allows aid-in-dying, in order to obtain medication that would end her life before her cancer did. Her story sparked intense controversy, with critics arguing that ending one's own life is never an acceptable choice. Julianna, meanwhile, hasn't opted to actively end her life; rather, she wishes to forego treatment that could save it. Since she's underage, the question of whether Julianna can fully understand her choice looms, echoing the story of Cassandra C., a 17-year-old Hodgkin's lymphoma sufferer who was forced to undergo chemotherapy that she claimed she didn't want. But while sufferers of Hodgkin's lymphoma stand an 85% chance of survival if they receive treatment, Julianna doesn't enjoy such odds. "For her, there is no light at the end of the tunnel," Danny Hsia, MD, Julianna's pulmonologist, told CNN. "She doesn't have a long time to live." And Julianna prefers to spend what time she does have at home, with the family she loves.