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Assisted suicide and refusal of life support have always been heated topics. While some feel it is the patient’s choice to pass away in the comfort of their own home surrounded by friends and family, others believe everything should be done to save someone. But what if that patient has an incurable and terminal disease and is only five years old? Such is the case with Oregon resident Julianna Snow, a young girl who has Charcot-Marie-Tooth (CMT). This inheritable neurodegenerative disease affects sensory and motor nerves. Snow was only recently diagnosed, and while she is currently stable, just catching even a simple cold could cause her to die. If this happens, she has decided she wants to pass away at home and not go to the hospital.
This “Heaven or Hospital” decision was first brought to light by Snow’s mother, Michelle Moon, who shared their story on The Mighty. This website offers a place for people to post their personal accounts on disability, disease, and mental illness. Moon has published conversations she has had with her daughter about whether or not Snow would want to go to the hospital if she ever caught an infection that could be fatal.
Snow, who is fed through a tube connected to her stomach and breathes through a respirator which is always attached to her, has a very severe case of CMT. As the disease is inherited, her mother, who is also a neurologist, went to work researching how her daughter could have developed CMT. Moon found that her husband, Steve Snow, also had CMT. As his case was mild, it had never been discovered, but since Snow’s nerve coverings have not formed properly, her case is critical.
Snow’s life has been threatened before. In January of 2013, she spent eleven days in the hospital trying to breathe. She had caught a cold, but it had developed into something far worse because of her CMT. She required air to be pumped into her through a pressurized mask. Prior to this, she had weakened arms and legs, but this cold crippled her breathing muscles. The doctors were able to save her, and she was able to return home, but unfortunately, this was not her last time staying in the hospital.
When Snow was four years old, she stayed at Doernbecher Children’s Hospital in Portland, Oregon three times within a ten-month period. Medical staff found her condition was getting worse. During this time Snow grew to hate the hospital. She was having a more difficult time breathing and coughing, and the mucus, which settled in her lungs, repeatedly led to pneumonia. The treatment which followed was the reason she despised the hospital the most. Since Snow was unable to rid her lungs of the mucus herself, she had to have tubes placed into her lungs through her nose. This practice, known as naso-tracheal suctioning, was successful in disposing of the mucus. It had to take place often during her third visit, and since it is dangerous to be done when a patient is sedated, she was fully conscious throughout the suctioning.
It was soon after this third visit that her parents discussed with her if she would want to return to the hospital if she ever grew sick again. Snow decided she would not want to return to the hospital, even if it meant her life could be saved. She decided she wants to go to Heaven. After discussing it, Moon and her husband decided it would be best to take Snow’s choice into account. “She made it clear that she doesn’t want to go through the hospital again,” wrote Moon. “So we had to let go of that plan because it was selfish.”
However, many do not agree with the choice the parents have made. Most believe Snow is too young to make such a large decision. “Unbelievable that any parent would think a 4-year-old is able to understand or make a decision on life,” wrote one critic, who has a child with a chronic illness. “Clearly that mother asks her leading questions. This article sickens me.” However, it was not just commenters of Moon’s post who were voicing their opinion. Bioethicist Arthur Caplan, the founding director of the Division of Medical Ethics at New York University, also disagrees. “I think a four 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 four year old can understand the concept of death.”
Still, there are those who support Snow and her parents. Dr. Chris Feudtner, a pediatrician and ethicist at the Children’s Hospital of Philadelphia says, “Palliative care isn't about giving up. It's about choosing how you want to live before you die. This little girl has chosen how she wants to live."
It is likely those who contradict this choice are not considering the consequences of returning to the hospital. If Snow gets another infection and is taken back into intensive care, she will be subjected to painful procedures. Even if she survives, her life will only be lengthened slightly. It is also likely that once in the hospital she will be sedated and on life support; she will no longer be able to think or speak like she does currently.
Even if she is five years old, it is good that her parents listened to her request. Their family has picked this option together. “If she gets sick, we’ll ask her again, and we’ll honor her wishes,” says Moon.
For now, Snow will be staying at home with her parents and her brother, Alex. She has spoken with her mother numerous times about what she plans to do in Heaven when she dies. Here’s a snip-it of one of these conversations.
Snow: Don’t worry, I won’t be alone.
Moon: I know. I love you.
Moon: Yes, I love you madly. I’m so lucky.
Snow: And I’m so lucky.
Snow: Because you love me madly.
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