Five-year-old Julianna Snow has suffered from an incurable neurodegenerative illness called Charcot-Marie-Tooth disease since birth. She can’t move, eat or breathe on her own; Julianna has to wear a breathing mask at all times, and is confined within her family’s Portland home. The little girl has struggled with this tasking disease her entire life but now, according to her doctors, Julianna’s condition has progressed to the point that even a minor cold could kill her.
“For her, there is no light at the end of the tunnel,” Dr. Danny Hsia, Julianna’s pulmonologist, told CNN. “She doesn’t have a long time to live.”
Dr. Sarah Green of Doernbecher Children’s Hospital in Portland, Oregon was the one to break the news to Julianna’s parents. She explained that they had a choice – they could bring Julianna back to the hospital for more painful procedures, despite the low survival rate, or keep their daughter at home to forgo treatment, where she would most certainly die. Green also explained that even if Julianna were to survive the hospital stay, it would not be for very long and she’d be sedated for the remainder of her time, unable to think or talk.
Julianna’s parents, Michelle Moon and Steve Snow, were now faced with a dilemma: were they willing to watch their daughter continue to suffer for the smallest chance of survival or would they be able to finally let go? The couple decided to leave the choice up to their daughter.
“Julianna made it clear to us that she does not want to go to the hospital again,” Moon wrote on the blog she’s kept over the years. “Like so many kids who have had to face life-threatening illness, she is wise beyond her years.”
Michelle also posted an email exchange with her mother in which she recounts the conversation she had with Julianna, who was 4-years-old at the time:
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
Julianna: not the hospital
M: Even if that means that you will go to heaven if you stay home?
M: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.
J: Don’t worry. God will take care of me.
M: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.
J: I understand.
M (crying): I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.
J: That’s OK. God will take care of me. He’s in my heart.
Michelle Moon and Steve Snow are both devout Christians; they had previously explained to Julianna that heaven was a place where “she will be able to walk, jump and play. She will not need machines to help her breathe, and she will be able to eat real food.”
Their decision, however, has been met with much controversy from ethicists in the medical community and parents alike who believe that Julianna is far too young to make such a loaded decision on her own.
“Unbelievable that any parent would think a 4-year-old is able to understand or make a decision on life,” commented one mother. “Clearly that mother asks her leading questions. This article sickens me.”
Bioethicist Dr. Art Caplan, head of the Division of Medical Ethics at New York University’s Langone Medical Center, also weighed in on the parent’s unique take on their situation.
“This doesn’t sit well with me. It makes me nervous,” Dr. Caplan said. “I think 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 age 9 or 10.”
“She’s scared of dying, but has, to me, demonstrated adequate knowledge of what death is,” Michelle responded to her criticizers. “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.”
Dr. Chris Feudtner, a bioethicist and pediatrician at The Children’s Hospital of Philadelphia, agrees with Michelle and has commented that there is no way a third-party would be able to truly understand Julianna and her family’s experience and therefore accurately comment.
“To say [Julianna’s] experience is irrelevant doesn’t make any sense,” Dr. Feudtner said. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”
Michelle was understandably hurt to hear so much judgement from strangers but has remained resolved. She told CNN that she understood how others were having a “difficult time understanding what she and Steve have decided.
“If you haven’t met Julianna,” she said. “It’s hard to explain how even at such a young age, she understands the choice that’s in front of her, how she’s the one who experiences the suffering and should get a say in what will happen to her.”