“Heaven or hospital?” That is the question that sparked an international heated debate online. It all started when the story of Julianna Snow was posted by her mother, Michelle Moon. The 5-year-old had been suffering from an incurable neurodegenerative illness called Charcot-Marie-Tooth disease or CMT, since birth. As her condition worsened, her family decided to respect the end-of-life choice no child should ever go through.
Heaven or Hospital: Inside a Family’s Decision for Their Terminally Ill Daughter
In October 2014, Julianna returned home from yet another lengthy stay in the pediatric intensive care unit. Michelle and her husband, Steve Snow, a U.S. Air Force veteran, decided to place their little girl in hospice care at their home in Washougal, Washington.
Julianna couldn’t eat or move, she had to wear a breathing mask the whole day and was confined to her room. At this point, her CMT had progressed to a critical stage that even a minor cold could come at the cost of her life.
“For her, there is no light at the end of the tunnel,” Dr. Danny Hsia, Juliana’s pulmonologist, told CNN. “She doesn’t have a long time to live.”
Four months later, in February 2015, Julianna and Michelle started to have conversations about death. To cope with her stress and overwhelming sadness, Michelle posted the essay “My Daughter Wants to Choose Heaven Over the Hospital” on The Mighty a month after.
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Watching a child suffer is the worst thing a parent can ever go through. Julianna’s parents, who are devout Christians, had to put their mind and hearts together to decide what was best for their daughter. On one hand, they could bring her to the hospital where she would be surrounded by the best medical care, or she could remain at home and be at the comfort of her own bed with her loved ones around.
“Julianna made it clear to us that she does not want to go to the hospital again,” Moon wrote on the blog. “Like so many kids who have had to face life-threatening illness, she is wise beyond her years . . . I do not think that she will survive another illness, especially without aggressive intervention.”
Mom: You don’t want to go to the hospital, right, J?
Juliana: I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital].
M: I know. So if you get sick again, you want to stay home?
J: I hate NT. I hate the hospital.
M: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
M: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
J: But I won’t be alone.
M: That’s right. You will not be alone.
“We believe that sometimes it’s an act of love not to do ‘everything’ to extend life and focus instead on giving your child the most beautiful life possible for as long as you’re allowed,” Moon wrote. “Very clearly, 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.”
The following morning, Michelle informed her husband. This made the couple rethink their plans to send Julianna back to the hospital. They spoke with the medical team who advised them that Julianna’s wishes should not be ignored.
After posting about her story online, dozens of people have voiced their support for Michelle and her family. Among those who thanked her for her bravery were families going through a similar ordeal. However, there have been those who are understandably uncomfortable with the situation. Dr. Art Caplan, for example, told CNN that “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 9 or 10.”
Overall, Michelle always feared the loss of her child and acknowledged how that fear haunted her whole life. But deep inside, she kept her daughter’s best interest at heart.
“We have had more conversations, mostly initiated by Julianna,” Moon wrote in June. “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.”
Juliana Snow died on June 19, 2016, in her family home.
Charcot-Marie-Tooth disease is one of the hereditary motor and sensory neuropathies, a group of varied inherited disorders of the peripheral nervous system. It is characterized by progressive loss of muscle tissue and touch sensation across various parts of the body. The disease can manifest during early childhood to early adulthood. As of this writing, there is no known cure for CMT.