All of you parents out there, perhaps mothers especially, have been through nights when a baby simply will not go to sleep. Fuss, fuss, fuss. Or sometimes, happily wide awake...until you lay him down. Youngest Daughter started out alert in the delivery room and has continued to be alert since then, pretty much non-stop. And she was a night owl. At 3 a.m., she would wake up for a feeding, and no matter how low I tried to keep the lights, I'd see those bright, big eyes looking all around. Head turning. The world was just so interesting. Why would anybody want to sleep? Ever?
Well, now there's a disturbing story out of Canada with a happy ending (or a happy plateau for the moment), because a baby wouldn't go to sleep.
Two-month-old Kaylee Wallace has Joubert Syndrome, which is causing sleep apnea. She breathes fine on her own when awake but is ventilator dependent (to some extent or other) while asleep. Her parents had decided to "let her die" and donate her heart to another child using the non-heart-beating donor protocol. I've written about this protocol here. At Kaylee's hospital, they planned to wait five minutes after her heart stopped before declaring her dead, but in some places where they use this protocol they wait only 75 seconds before declaring an infant dead and taking his organs.
So, in a macabre death-watch, they carted Kaylee off to the operating room around a time when they expected her to go to sleep, took her off her ventilator, and...waited for her to fall asleep and die, or "die"--stop breathing, let her heartbeat stop for five minutes, refuse to revive her, and then harvest her heart for another child. But it was just one of those darned things: Kaylee was too interested in living. Maybe she thought the operating room looked cool. She wasn't ready to fall asleep. No, no, no. Who knows what they tried. It boggles the mind. Did somebody snuggle her to try to make her comfy, so she would fall asleep and die, so they could get her heart? I don't know. It's hard to imagine people participating in such a process. But she wouldn't play ball. The story says the process was supposed to go through if she died in two hours. So I'm guessing she stayed awake for two hours, bless her little heart. (Literally.) Just went on breathing.
The hospital says that Kaylee is "no longer a candidate" to be an organ donor, but that this determination is "subject to change." I assume that at a minimum this means they aren't just going to try this little dance of death over and over again, hoping to catch Kaylee sleeping. But it's unclear what would make her a candidate once again.
Meanwhile, her parents are "scared" by the fact that she didn't die! You see, they've made up their minds that Kaylee is dying (though this is questionable), and now they consider that if she dies without having her organs harvested, they have also "lost" another child who might have received her heart. Says her father, "If she's going to die, we got to keep trying. I want my child to pass on because she can't survive, and to save that child. This is our first child and the dreams of the grandparents, the hopes of the future...have been dashed, yet the hopes of another child doing the same thing is what we live on for here." Get that? What they are now living for is the hope that their baby may die in such a way that her organs can be harvested. And, "That's what scares us right now," Wallace said Tuesday, his voice cracking. "Losing our daughter's OK, I understand that, but I don't want to lose two."
I wonder what they will tell Kaylee if she lives.