Julianna Snow is dying of an incurable disease. She’s stable at the moment, but any germ that comes her way, even just the common cold virus, could kill her. She’s told her parents that the next time this happens, she wants to die at home instead of going to the hospital for treatment.
If Julianna were an adult, there would be no debate about her case: She would get to decide when to say “enough” to medical care and be allowed to die.
But Julianna is 5 years old. Should her parents have let her know how grave her situation is? Should they have asked her about her end-of-life wishes? And now that those wishes are known, should her parents heed them?
Missing milestones, and a medical mystery
When she was 9 months old, Julianna’s parents noticed she couldn’t sit up steadily, something most babies can do around 6 months. At her first birthday, when children typically start to walk, Julianna couldn’t even pull herself up into a standing position.
Julianna Snow at 3 months old.
This worried Michelle Moon, as a mother and as a neurologist. “The worst thing in the world for a neurologist is to not hit your milestones,” she says. “But I tried really hard not to overreact and freak out.”
In January 2013, Julianna spent 11 days in the hospital struggling to breathe, most of it in the intensive care unit.
At 2, she could sit up unsupported and walk with a walker, but now, she couldn’t do either. She once had nearly full use of her arms, but now couldn’t even hold a small toy without help. At one point she ate food, but now her chewing and swallowing muscles were so weak, she was fed through a tube in her stomach.
The doctors had been able to pull Julianna out of it each time, but by definition, because CMT is a progressive disease, her breathing muscles would only get weaker and weaker. If she got another infection, her doctors weren’t sure they’d be able to help.
Green proceeded with the conversation slowly and carefully. She asked Steve and Michelle: If Julianna were to get another infection, would they want to bring her back to the hospital? There was a reasonable chance Julianna would die there after being subjected to painful procedures. Even if she lived, it would likely be for a short time, and she’d likely be sedated, unable to think and talk as she could now.
The other option would be for her to stay home and forgo treatment, in which case Julianna would most certainly die. But she would be dying at home and without painful medical interventions.
There was no right or wrong answer, Green told them. The choice was up to them.