Parents allow terminally ill 5-year-old to die at home

Julianna Snow has an incurable disease, spinal muscular atrophy, which kills many patients before they reach two years old.

So earlier this year, her parents, Michelle Moon and Steve Snow, asked her what she wanted to do the next time she got seriously ill and needed to go to the hospital.

If Julianna gets sick, Michelle says she will ask her again if she wants to go to the hospital or heaven, and “we’ll honor her wishes”.

A five-year-old girl has made the heartbreaking decision that she would rather die at home than extend her life in a hospital. “It makes me nervous”, Art Caplan, the founding director of the Division of Medical Ethics at New York University, told CNN.

Nevertheless, Julianna by no means answered her explanations. It’s not like they pushed ideals of Heaven onto her. Julianna asked to stop, and her mother had an honest conversation with her little girl about what that meant. J: I don’t want you to be sad.

‘This doesn’t sit well with me. Michelle recounted an exchange with Julianna: J: I will love you forever. However, the medical community is unsure that Julianna really understands the concept of death. CMT causes foot deformity, loss of muscle in the legs and makes movement, balance, swallowing and breathing hard for those who suffer from it. Julianna now uses a breathing mask because of the severity of her condition.

Juliana Snow’s neurodegenerative illness is also known as hereditary motor and sensory neuropathy. “We have had more conversations, mostly initiated by Julianna”. Michelle admitted that she didn’t think Julianna could survive another illness without treatment, so she had several conversations with her daughter about Heaven. Hsia went on to call Julianna’s parents phenomenal, and said they only want what’s best for their daughter. However, she understands what death is and knows her family could not go with her if she passes away. Should her parents have let her know how grave her situation is?

However, Dr. Chris Feudtner, a pediatrician and ethicist at Children’s Hospital of Philadelphia said that to say Julianna’s experience is ‘irrelevant doesn’t make any sense’.

If Julianna faces infection again and spends the remainder of her life hooked up to a machine that breathes for her, her parents might still choose to turn them off. The only difference is, now they are making the decision to take her off the machine before the machine is even necessary.

I don’t presume to know the unimaginable pain of Julianna’s parents. Instead, she preferred heaven before doing more therapy or treatment without hope. Because they are just children. Because her muscles and nerves are affected by the disease, Julianna can not walk, but her brain is unaffected. It’s one thing to do that when you know you’ll have a success at the end, but for Julianna, there is no success.

We do, though, or many of us do, allow 5-year-olds to participate in a few decisions-even quite important ones.