5-year-old chooses heaven over hospital

Parents let five-year-old daughter make the decision to live or die.

Julianna Snow would rather go to heaven than to the hospital – and her parents are intent on honoring her last wishes.

Hailing from Oregon, Julianna Snow suffers from a neuromuscular disease known as Charcot-Marie-Tooth disease, which is degenerative in nature and characterized by increasing loss of muscle and touch. It affects one out of every 2,500 people and in Julianna's case, it has become so severe that doctors cannot save her life even if she makes another trip to the hospital. The most likely scenario is that she would be sedated and kept on a respirator.

Right from the time she was born, Julianna had trouble with her motor skills, and the doctor in Michelle kept telling her that she would start to walk at a later age, and this was not unusual, as different babies exhibit signs of development differently. However, when Julianna started having difficulty breathing and swallowing, Michelle recognized the symptoms as that of Charcot-Marie-Tooth disease.

But Charcot-Marie-Tooth disease is inherited, and she didn't have it. That is when she remembered her husband's high heel arches. She took a reflex hammer to his Achilles tendon, and it was just as she feared. Her husband Steve Snow had Charcot-Marie-Tooth disease, although mild, which was why several physical examinations – Steve an Air Force pilot – had missed it earlier. Even Steve wasn't aware of it until then. The mother in Michelle still held out, and so she took Steve to a clinic where electrodes were attached to his body and a neurologist officially diagnosed him as having the disease. Steve now takes care of Julianna full-time.

Julianna spent a total of 66 days in the hospital last year, being admitted to the Pediatric Intensive Care Unit thrice in ten months. She is now so weak that even a minor infection, such as contracting common cold, could kill her. She turned five in August this year, and based on a conversation with her, her parents have decided to let her die if her condition worsens. They have told her that going to heaven means dying and that she would be all alone in doing so. Although Julianna is sad about dying, she realizes that she won't be alone forever, that her family would soon join her.

Michelle and Steve’s decision has drawn flak from various quarters, including those who question whether a child of five is capable of knowing the difference between life and death, and whether her wish to die should even be considered.

Critics are skeptical of the type of Christianity the family may have been preaching to the girl, since she is not well enough to actually attend church. Writer Lucius McMannis says the parents have “brainwashed” their daughter and filled her head with fairy tales, rather than choosing to put their faith in medicine.

End of life and assisted suicide decisions have been the subject of conversation over the past year, most notably for the latter, surrounding the case of Brittany Maynard, who chose to end her own life rather than live with a terminal illness. Earlier this year, California’s governor approved a Right to Die bill, which allows patients to choose to end their medical care if they so desire.

Resources

Follow the Conversation on Twitter