There are those who could not bear to be faced with such a choice and responsibility, and while living through it is one thing, this couple’s decision to share the following painful experience with the world commands serious respect.
Michelle Moon and Steve Snow, of Oregon, US have made headlines around the world this week, after going public with their decision to allow their five-year-old daughter to choose ‘heaven over hospital’.
Little Julianna has battled Charcot-Marie-Tooth disease – an incurable neurodegenerative condition – since her birth, and she has spent much of her life in and out of hospital, receiving painful treatments.
While Julianna is stable right now, doctors believe that even catching a cold could seriously threaten her weak immune system, and resuscitating her could put her on a respirator. In short, if Julianna gets worse, she will have very little quality of life.
The painful naso-tracheal suctioning procedure that Julianna undergoes numerous times each day, in particular, causes the tot deep discomfort – which is why, at the age of four, the tot told her mother that she would rather go to heaven than be treated in hospital.
In a blog post for The Mighty, which has since gone viral, mum Michelle recalled the emotional moment that her young daughter made her wishes known:
"Michelle: 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].
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?
J: (nods)
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."
In an interview with CNN, Michelle said this week: “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 honour her wishes.”
While many people have expressed their admiration for Michelle and Steve, as you can imagine, others have shared their concern over little Julianna making this life-or-death decision.
What are your thoughts?
