PORTLAND, Ore. — A couple in Oregon has announced that they are planning on following their five-year-old daughter’s wishes not to return to the hospital when she becomes sick again, opting for “heaven over the hospital.”
Julianna Snow was diagnosed with Charcot-Marie-Tooth disease (CMT) at the age of two after numerous visits to the doctor in an effort to understand her developmental problems and weakness in her arms and legs.
Her mother, Michelle, a neurologist, soon found that her husband, Steve, had CMT in a mild form and realized that their daughter might have genetically inherited the ailment. Snow underwent treatments and physical therapy to fight the CMT, but struggled with weakened lung muscles that made it hard to breathe and also experienced difficulty swallowing.
Sometimes she contracted pneumonia, and doctors became concerned about what might be the outcome if she acquired another infection. Most die from CMT, regarded as a terminal illness, by the age of two, but Snow had already beat the statistics.
According to CNN, which interviewed Michelle Snow, Julianna expressed to her parents that she hated going to the hospital. Her parents would explain why she needed to go, and that even though her treatments were unpleasant, it allowed her to get better so she could come home.
One day, after the then four-year-old girl would not respond to her parents explanations as to why the hospital was helping her get better, her mother decided to talk to her about her wishes. Snow posted the conversation as best as she remembered it on her blog.
“Julianna, if you get sick again, do you want to go to the hospital again or stay home?” she asked.
“Not the hospital,” Julianna replied.
“Even if that means that you will go to Heaven if you stay home?” Snow inquired.
“Yes,” Julianna replied. “I hate NT (naso-tracheal suction, a procedure where a tube is placed into one’s nose and down their throat to clean their lungs). I hate the hospital.”
“[I]f you go to the hospital, it may help you get better and let you come home again and spend more time with us,” her mother reasoned. “I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.”
“I understand,” Juliana stated, acknowledging that her mother will miss her. “God will take care of me. He’s in my heart.”
“She made it clear that she doesn’t want to go through the hospital again,” Snow told CNN. “So we had to let go of that plan because it was selfish.”
“If she gets sick, we’ll ask her again, and we’ll honor her wishes,” she further explained in a recent blog post.
But medical ethics professor Art Caplan of the New York University Medical Center believes that the choice should not be left up to the girl.
“I was very concerned. I know it’s difficult to intrude into personal family matters but the family brought this out to the open,” he told local television station KATU. “[A]t five-years-old, a little girl can’t make make these decisions.”
“Obviously you want to listen to her, but I don’t think you can make such weighty decisions and the parents can’t rely on that for the basis for what they are going to do,” Caplan continued.