Julianna Snow, the 5-year-old girl who ignited a worldwide dialogue about wrenchingly tough judgments for terminally ill children, died on Tuesday.
Julianna’s mother, Dr. Michelle Moon, wrote on a blog devoted to her daughter “Our sweet Julianna went to heaven today”. She further wrote that “I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together.”
Julianna was born with an irredeemable neuromuscular illness. Julianna’s parents consulted with their daughter about whether she would want to go to the hospice if she were to have a possibly deadly complication. The other choice was to decline care and go to heaven. Julianna picked heaven and her parents, in discussion with Julianna’s doctors, stood by her choice.
That choice about heaven over hospital started a discussion about what kind of care a child with a possibly deadly disease should get and whether the child herself should be referred in the decision making.
Art Caplan, director of the division of medical ethics at New York University School of Medicine said that Julianna was an extraordinary little girl. Caplan added that she educated that even a child can become very conversant about a challenging disease and can carry kind and notable feelings about her illness and her ideas.
When she was 2 years old, Julianna was identified with Charcot-Marie-Tooth disease, a neurodegenerative illness. By the time she was 4, she’d lost the use of her arms and legs. Her swallowing muscles were so feeble that she had to be fed through a tube in her stomach. Her breathing muscles suffered too and she was in and out of Doernbecher Children’s Hospital in Portland, Oregon.
But her mind functioned flawlessly. That’s why her parents referred Julianna, then only 4 years old, when doctors at Doernbecher told them they would have to make some very tough medical decisions.
The doctors clarified to her parents that they should deliberate what they wanted to do the next time an infection made it difficult for their daughter to breathe. Parents were told if they want to bring Julianna back to the hospital as they said there was a practical chance that Julianna would pass away there after being subjected to painful processes. Even if she survived, they said, it would perhaps be for a short time and she’d probably be frozen, unable to think and talk. There was no right answer, the doctors told them.
Early last year, Moon asked Julianna what she wanted to do and wrote about the conversation on her blog, where Julianna decided to go to heaven and said that God will take care of her.
Julianna was in hospital for the last 18 months of her life. During that time, she loved to wear princess outfits, make up intricate stories and games, do arts and crafts projects with hospital helpers and have her toenails painted.
Julianna’s mother said that the end was very quick. She that Julianna got sick very suddenly and it was back to the same battle of helping her breathe. She said that this time, she didn’t bounce back. She got worse and worse and was gone in just over 24 hours.
Julianna’s mother said that they had the full care of hospital and they had the things that they desired to keep Julianna relaxed. Mother said that her daughter pass away at home, in her princess room and in her mother’s arms.
Julianna’s story touched millions of people. Most of them voiced support for the family’s decision, although some people with neuromuscular disabilities condemned and started a Facebook campaign called “Dear Julianna.”
In her blog, Moon wrote that she wants the world to remember Julianna as the bright light who loved love and everyone except the bad guys. She wrote to not forget her. She wrote that her daughter lived, she was real, and she mattered.
In the end, Julianna got her desire to pass away without medical interferences.