A family has made the tough decision to grant the "heaven or hospital" end-of-life request of their terminally-ill, 5-year-old daughter. The Oregon girl has suffered from the incurable Charcot-Marie-Tooth disease (CMT) since her birth, must always wear a breathing mask, cannot eat or move, and is unable to leave her family's home. The girl's condition has reached a critical stage, but her parents' choice to respect her dying request has sparked a heated public debate.
Juliana Snow's neurodegenerative illness is also known as hereditary motor and sensory neuropathy. It is named for the three people who first discovered and described it.
CMT is caused by genetic changes that affect the structure or functions of neurons, while the main symptoms include weaker and smaller muscles, and less feeling in affected areas, according to Mayo Clinic. Due to the current CMT stage in Juliana the common cold might be deadly.
Dr. Danny Hsia is Juliana's pulmonologist (lung condition/disease specialist). He explained that she does not have long to live.
Juliana's Christian parents considered her severe illness and its late stage. The next time she gets sick there is a small chance doctors could save her life in the hospital, but she would probably die if she stayed at home.
Earlier this year Juliana's mother Michelle Moon wrote in a blog post on The Mighty that her family would let the little girl make the choice. Juliana made it clear she wanted to stay home. She hated the hospital, and especially the difficult treatments.
Moon's blog posts have received praise and criticism from people including the medical ethics community, according to The Huffington Post.
Dr. Art Caplan works at New York University's Langone Medical Center. He told CNN that Juliana is too young to understand the idea of death.
However, Dr. Chris Feudtner of The Children's Hospital of Philadelphia disagreed. He argued that Juliana knows first-hand what it is like to have a terminal illness like CMT.
Moon explained that Julianna is scared of dying. However, she understands what death is and knows her family could not go with her if she passes away. Thus, her parents will ask her the "heaven or hospital" question once again if she becomes sick, and then honor her wishes.