The parents of a 5-year-old Oregon girl with an incurable and progressive disease have chose to let their daughter make a gut-wrenching decision: Return to the hospital for a slim chance to prolong her life, or stay at home and go to heaven.
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Charcot-Marie-Tooth (CMT) disease, also known as hereditary motor and sensory neuropathy (HMSN), is a hereditary condition characterized by damage on peripheral nerves affecting around one in 2,500 people in the United States. 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. They say even a minor cold could now kill her.
In the meantime, Julianna spends most of her time playing in her room and communicating with family and friends.
Doctors told her parents, Steve Snow and Dr. Michelle Moon, that each hospital visit could be her last. Her parents also told her that when she gets to Heaven, she will meet God, who loves her even more than they do.
Moon said it’s been a year since Julianna’s had an infection, and for now she is just enjoying time with her daughter. That prompted Moon, a neurologist, to have a conversation with her daughter about if she wants to go to the hospital or stay home when she gets sick again.
What Julianna’s religious parents have chosen to do has sparked a huge debate: they asked their daughter if she would want to go to the hospital the next time she falls ill, or if she wants to stay home – where she would die and “go to heaven”.
Moon: You don’t want to go to the hospital, right, J?
The family’s decision has led to criticism from a few groups, saying the girl is too young to make such an important decision.
“Julianna made it clear to us that she does not want to go to the hospital again”, Moon wrote.
Julianna, who has Charcot-Marie-Tooth disease, once had almost full use of her arms, but now can’t even hold a small toy without help. She added that she hates the hospital.
“This doesn’t sit well with me”.
J: That’s OK. God will take care of me.
Michelle: Yes, I love you madly.
“Unbelievable that any parent would think a 4-year-old is able to understand or make a decision on life.” said Michelle and Steve after hearing Julianna’s wishes. I know you don’t like it when I cry.
He believes Julianna might be “capable of deciding what music to hear” or “what book [she] might want to read”. “That kind of thinking doesn’t really develop until around age nine or 10”. “I do not think that she will survive another illness, especially without aggressive intervention”.
Caplan, before he started the bioethics program at New York University a few years ago, worked at the University of Pennsylvania and consulted on end-of-life cases at Children’s Hospital of Philadelphia with Dr. Chris Feudtner, a pediatrician and ethicist there.
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At one point, Julianna ate food, but now her chewing and swallowing muscles are so weak she’s fed through a tube in her stomach.
