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Do not resuscitate (DNR), or no code, is a legal order written either in the hospital or on a legal form to withhold cardiopulmonary resuscitation (CPR) or advanced cardiac life support (ACLS), in respect of the wishes of a patient in case their heart were to stop or they were to stop breathing.

Each year more than 100,000 people are given the choice to refuse medical treatment in the event they become ill and cannot breathe on their own or their heart stops working. In most cases, the option of DNR is given to patients who painfully suffer from terminal illnesses, are above the age of 65, and the chance of regaining an optimal quality of life is slim.

A DNR patient chooses to die peacefully at home with their family or in a palliative care/hospice facility where their comfort and cleanliness while dying is the only attended concern. Families across America have conversations with ill loved ones every day to determine their status on receiving medical treatment. It is a hard conversation to have, but what if you had to have this conversation not with your elderly parent or adult spouse, but your young child?

Meet Julianna Snow (Insert Pic)

Julianna is a five-year-old girl with a severe case of an incurable neurodegenerative illness called Charcot-Marie-Tooth disease. CMT, is a group of inherited disorders that affect the peripheral nerves, which are the nerves outside the brain and spinal cord. CMT is just one kind of neuropathy (also called peripheral neuropathy), meaning simply that the peripheral nerves are damaged. It affects about 2.8 million people worldwide, of all races and ethnic groups.

This is an excerpt from a letter Michelle, Julianna’s mother, sent to their family and friends on October 28, 2014.

“Dear Friends,

 You may or may not know that Julianna was hospitalized almost 3 weeks ago for another respiratory problem. She is better now and will come home tomorrow.

 In 2014, Julianna spent 66 days in the hospital. This was her third PICU [Pediatric Intensive Care Unit] admission in ten months. We tried so hard to keep her out of the hospital, but it seemed like nothing was working…

Julianna turned 4 in August. She is a bright, kind, funny and amazing girl who happens to have an awful, debilitating neuromuscular disease. The worst part of her disease is that it affects her breathing and swallowing – these are the things that ultimately shorten lifespan in people with neuromuscular disease… 

We don’t know how much time we have with her – it could be months, it could be years.”

 

Julianna has been lucky. Most children with her condition do not live to see their second birthday. She has made it to age five. However, it has not been an easy fight to stay alive. From the age of two, her muscles have been getting severely weaker and the slightest sickness i.e. your common cold ushers her to the hospital where she cannot be sedated but must painfully endure NT, Nasotracheal suctioning, the process of extracting mucus from the lungs with tubes through the nose.

Julianna cannot swallow so she is also fed through a tube in her stomach. She wears a breathing mask 24/7, and she is bound to a electrical wheel chair that her hand muscles are too weak to operate.

Last October, doctors told the family Julianna’s chances of survival post another infection were highly unlikely especially with any level of quality living. It was then that the family began to consider if any further painful medical treatment was worth it.

Mom Michelle shared the conversation they had with Julianna on her blog.

Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

Julianna: Not the hospital.

Michelle: Even if that means that you will go to heaven if you stay home?

Julianna: Yes.

Michelle: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.

Julianna: Don’t worry. God will take care of me.

Michelle: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.

Julianna: I understand.

Michelle: (crying) – I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.

Julianna: That’s OK. God will take care of me. He’s in my heart.

 

This is every parents worst nightmare. No one is suppose to bury their child. For most it happens suddenly without choice or consideration, but for this family it is happening painfully and slowly. Are they doing the right thing? Should a child be allowed to make decisions about his or her own quality of life and medical treatment?

The Snow family has chosen to honor their daughter’s wishes and not subject her to any further hospitalization should she get sick. They believe that Julianna is well aware of her own suffering and what options she has in the after life as well as those on earth. The next time Julianna gets sick, what happens next will be up to God, not a doctor.

Can a child choose heaven over the hospital? Would you let your child make that decision?

 

For more information on The Snow Family’s Story see CNN’s series coverage “Heaven or Hospital.”

Clarissa Joan is a spiritual life coach and editor-in-chief of The Clarissa Joan Experience. She resides in Philadelphia, Pa with her Husband, their two girls, and a yorkie named Ace. Clarissa is also an expert in impact investing. She is the Communications Associate at Impact America Fund.

 

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