Parents allow dying 5-year-old daughter to choose: 'heaven or hospital?'
After being diagnosed with a painful degenerative disease, a 5-year-old girl made the decision to "go to heaven" instead of the hospital.
It started when Julianna Snow was 9 months old. Her parents, Michelle and Steve, noticed that she couldn't sit up steadily. When she turned 1, she still couldn't pull herself up into a standing position.
After Julianna's parents searched long and hard for the cause of their daughter's slow development to no avail, they realized that Steve's interestingly shaped feet might have something to do with it. Michelle remembered that high foot arches can sometimes be a sign of Charcot-Marie-Tooth disease, a neurodegenerative illness.
As Michelle knew that poor reflexes could also be a sign of the illness, she took a reflex hammer to Steve's Achilles tendon and noticed that he gave no physical response. Michelle said:
After going to see a neurologist, Steve was diagnosed with a mild case of CMT. Unfortunately, Steve's mild case had manifested as an intense case in Julianna. Not long after the diagnosis, Julianna was rushed to the hospital after experiencing trouble breathing. Julianna spent the next 11 days in the hospital in the intensive care unit struggling to breathe. She was hooked up to a pressurized mask that pumped air into her system.
The Charcot-Marie-Tooth disease was quickly attacking nearly every muscle in Julianna's body, including those that regulate her breathing. The doctors told Julianna's family that if she got another infection, there was a chance that she would die from the painful procedures. If she survived, she would likely become sedated until her death. The doctors gave Julianna's family the option to bring her back to the hospital or forgo treatment.
Michelle and Steve spoke to their then 4-year-old daughter about the decision they had to make. Julianna told her parents that she hated the hospital and considered the procedures to be painful. That's when Michelle decided to have a conversation with her daughter about heaven. Michelle asked Julianna if she would want to go back for more treatments or if she would want to die at home if she got sick again. Julianna adamantly chose heaven over the hospital. Michelle wrote to CNN:
Soon after making this decision, Michelle and Steve received backlash from people who said that a 4-year-old is incapable of making such an important and complicated decision. In response, Michelle created a blog post. She wrote:
"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. Very clearly, my 4-year-old daughter was telling me that getting more time at home with her family was not worth the pain of going to the hospital again. I made sure she understood that going to heaven meant dying and leaving this Earth. And I told her that it also meant leaving her family for a while, but we would join her later. Did she still want to skip the hospital and go to heaven? She did."
Michelle and Steve plan to abide by their now 5-year-old daughter's wishes should she get sick again and choose to forgo hospital treatment.
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