Choices. Often, choices are good. But sometimes, as a parent of a child with Down 
syndrome, I must choose between two bad options.
My daughter is 13. In addition to Down syndrome, she has scoliosis, or a curve in her spine. She also has sleep apnea, where the back of her throat closes when she sleeps. Sleep apnea causes her body to wake her so she can breathe normally. But waking up so much makes her sleepy all day. The simplest treatment for my daughter’s form of sleep apnea is to sleep on her stomach to keep her throat more open and help her sleep better. The treatment for scoliosis is to wear a Boston brace. It’s a hard plastic device that gently pushes on her rib cage to keep her spine from curving more.
But wearing a Boston brace and sleeping on her stomach together add up to a sleepless night for my child. We work on it. We try to add time in the brace. We try to keep her from flipping on to her back as she sleeps. But after weeks of waking many times a night for both of us, I’m right back to the newborn days of 3 AM feedings and 4 AM diaper changes. My daughter falls asleep on the beanbag chair at school. I nearly fall asleep in the car line for school pick-up. No one is happy. Something must give.
We must make a choice between these two treatments, weighing the short term impacts and the long term impacts. Without the brace, the spinal curve may progress over time. If it does, my daughter may need spinal surgery. It’s a big “if”. But wearing it means she gets a terrible nights’ sleep, every night, and so do I. It feels too hard to weigh the choice between sleep now and the fear of possible surgery in the future. But the immediate need for more sleep wins, and we ditch the Boston brace.
We go for the sure thing -more sleep- and keep our fingers crossed that the curve in her spine doesn’t get worse. It’s a terrible choice to have to make. And there are no do-overs, no second chances. My daughter now sleeps well, but I still toss and turn some nights, second guessing our choices. I worry about possible surgery in the future. I wonder if we tried hard enough to make it all work at the same time. Did we make the right choice?
Alisa,
Sleep is critical. Proper sleep allows everything in our bodies to function as normally as possible.
As someone with sleep apnea myself, I can simply say that I can understand your daughter falling asleep during the day in the beanbag chair, and, your falling asleep, too! (And, I nearly fell asleep behind the wheel, with my kids in the car, scaring the heck out of me!)
As parents, we beat ourselves up over the very difficult choices we are forced to make (my son has a host of medical conditions so I understand, though in a different way). I’m guessing the nighttime is the “only” or “ideal” time for her to wear the brace, but wonder if it might be of some benefit if she wore it for a few hours during the day? I’m no medical professional, just a thought.
Be kind to yourself. Sleep is critical, and the choices you face aren’t easy. I think, if I were in your situation, I’d probably choose the sleep–at least for now!