Julianna’s case was one of the most severe.
The disease affected the muscles she needed for chewing and swallowing, then those needed for breathing. Her lungs would fill with mucus and cause pneumonia. When this happened, doctors would need to perform nasotracheal suctioning, an exceedingly painful procedure in which a tube is threaded through the nose and down the throat, past the gag reflex and into the lungs in order to remove dangerous mucus build-up.
Julianna despised it.
Most children scream and need to be restrained during the procedure, but Julianna was eventually too weak to do anything but cry, her nurse Diana Scolaro — who often performed the procedure — told CNN. And while most children can be sedated for the process, Julianna was too weak.
She remained conscious for each one, feeling every second of pain.
After each session, Scolaro would tell Julianna, “Rest now, baby. Maybe you can make it two hours before we have to do it again.”
Scolaro told CNN, “It’s not for the faint of heart to take what she took.”
Juliana’s condition continued to worsen. She eventually required a pressurized mask to pump oxygen into her lungs, which were too weak to do it themselves. She was fed through a tube inserted into her stomach. Her tiny body had grown too frail to fight off another bout of pneumonia, or even the common cold.
In October 2014, Dr. Sarah Green sat down with Julianna’s parents, neurologist Michelle Moon and former Air Force pilot Steve Snow, to have a difficult conversation. The next time Julianna got sick, she would likely die. If doctors managed to save her, her quality of life would almost certainly be poor.
It was a decision Moon and Snow could have made on their own, and they had — they were going to bring Julianna to the hospital if she got sick again.
But then they decided to ask Julianna.
As Moon explained on Anderson Cooper’s “AC360, “Julianna had to go through hundreds of rounds of nasotracheal suctioning. She knows exactly what that was. She was awake for every single one. I think she has a right. I think she has a say.”
So Moon sat her 4-year-old daughter down to have a series of the most heart-wrenching conversations a parent could imagine.
“Not the hospital,” the girl said.
In another conversation, Julianna asked whether her mother wanted her to get treatment. Moon asked what Julianna wanted.
“I hate NT. I hate the hospital,” she said.
“Right. So if you get sick again, you want to stay home,” her mom said. “But you know that probably means you will go to heaven, right?”
“And it probably means that you will go to heaven by yourself, and Mommy will join you later.”
“But I won’t be alone,” Julianna replied.
“That’s right. You will not be alone.”
“Do some people go to heaven soon?” the 4-year-old asked.
“Yes. We just don’t know when we go to heaven,” her mom said. “Sometimes babies go to heaven. Sometimes really old people go to heaven.”
“Will Alex go to heaven with me?” Julianna asked, referring to her 6-year-old brother.
“Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone,” Moon told her. “Does that scare you?”
“No, heaven is good,” her daughter said. “But I don’t like dying.”
The two had many more conversations in this vein, Moon trying to ensure that, as much as possible, Julianna understood what dying means. Not only can most 4-year-olds not grasp the concept of death, most people can’t.
Still, a decision had to be made, and Julianna helped make one.
“I want to make it clear these are not Julianna’s decisions or choices,” Moon told People. “They are Steve’s and my decisions, but we look to Julianna to guide us.”
Her parents respected her wishes.
“She made it clear that she doesn’t want to go through the hospital again,” Michelle told CNN. “So we had to let go of that plan because it was selfish.”
On Tuesday, Julianna died at 5 years old.
“Our sweet Julianna went to heaven today,” Moon wrote on the blog dedicated to her daughter. “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.”
Since Moon first posted on the Mighty, a blog about people with disabilities, and began her own blog, Julianna’s story has received national attention. CNN wrote a two-part series on the family, which was also featured on “AC360.” People magazine profiled the family. Even the Korean Broadcasting System traveled to Washington state to film Julianna for a Christmas Day documentary (below, but not in English).
As her story grew, so too did backlash in response to their decision.
“Your daughter sounds super smart but, please, don’t let her be anything like the decision-maker on this. I’m so grateful my parents heard my articulate little 4 year-old thoughts, factored them in, and didn’t confuse my strong verbal skills with an older emotional age,” wrote one commenter on the Mighty.
“The fact that she used leading questions does not sit well with me. As an attorney, I cannot even use those types of questions when cross examining. So, to present the questions in such a format induces the child in subtle prompts to answer in a particular way … furthermore, a four year old lacks the full capacity to decide their own” mortality, wrote another.
“I am so sorry for the lack of support you and your husband get from people who do not know you or young Julianna,” one wrote in response.
Even bioethicists weighed in.
New York University bioethics professor Arthur Caplan told CNN, “This doesn’t sit well with me. It makes me nervous. I think a 4-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 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.”
“To say her experience is irrelevant doesn’t make any sense,” Chris Feudtner, director of the Department of Medical Ethics at the Children’s Hospital of Philadelphia said in response. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”
Karla Langlois, a hospice nurse who worked with Julianna, agreed.
“I think she’s very capable of having input into the end of her life,” Langlois told People. “I don’t know that it’s appropriate for every child but in this scenario it’s very appropriate.”
Moon even wrote a second post on the Mighty explaining her decision.
I realize that the idea of not doing “everything” to prolong the life of a young child is perhaps unacceptable to some. But when your child’s illness is terminal, when the disease takes more and more and the treatments become riskier and offer less return, there are choices. The choices seem impossible, and they’re painful. We believe that sometimes it’s an act of love not to do “everything” to extend life and focus instead on giving your child the most beautiful life possible for as long as you’re allowed.
“One of the reasons we’re continuing to share our story is to make the world a safer place for parents who care for and love terminally ill children,” Moon told People.
On Tuesday, Moon wrote, “Our sweet Julianna is finally free. Please do not forget her. She lived, she was real, and she mattered.”
Dear friends,Our sweet Julianna went to heaven today. 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. I wanted more time, of course, and that’s where the sadness comes in. But she is free now.I will have more to say later. For now, this is what is in my heart.Today, I just want the world to know that there was a girl named Julianna.She was a bright light. An old and delightful soul.She loved love, and “everyone except for bad guys.”She was an unabashed princess and she elevated everyone around her. We were all kings, queens, princes and princesses by association.She urged us to play, to really focus on just playing. She encouraged us to be our most colorful and fabulous self. (One of her last words to me: “What’s that?” to my gray sweater…)Her mind was “always going.” It took us to a beautiful world without limits.Her words were startling. Sometimes I thought that people wouldn’t believe the conversations I recorded. How could a five year old know those things? But if you spent any time with her, you knew.She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave. This last fight was not to be won by her body. It was tired, and it needed to rest. And when it did, she was comfortable.Today, she is free. Our sweet Julianna is finally free.Please do not forget her. She lived, she was real, and she mattered.I cannot believe that she’s gone. Already, I worry that some of her has faded, and I need to remember all of her. The way her warm little hands felt, the hugs she would give by asking you to drape her arm around your neck. The kisses she blew. They never ran out.Please remember our precious girl: she was Julianna.