Neuromuscular scoliosis occurs with some types of neurological disorders, including spina bifida, cerebral palsy or muscular dystrophy. In these instances, the children’s trunks are not strong enough to support themselves fully, and the spine curves into a long C-shape.
Got it. Dermot has this. A 50 degree curvature in his spine. "Severe" in the words of the first orthopedic surgeon we've ever met.
He was a kind man, by just looking at him you would probably guess he was about twenty-two years old. Of Asian descent, no visible wrinkles and wearing a stylish outfit (as far as doctor's go). He carried himself in a hurried fashion as if he was late for his chemistry final. Having already been briefed by his resident, he sits down at the end of the examination table, grabs Dermot's feet and begins to maneuver Dermot's limbs in a peculiar fashion. Then he asks to have Dermot sit up, slightly offended I immediately point out the obvious fact that Dermot does not "sit up". The doctor asks that I support him, which is asking a lot, especially in the now very crowded examination room.
Dermot sits up, with a great degree of assistance from me, and attempts to lift up his head to look around. No such luck. Dermot's long nearly six-year old body curls forward, he slumps his head nearly to his lap. While he's sitting like this the doctor talks about the many faults of his posture, comments on his lack of head control and the fact that his head leans to the left side, all the while Dermot is drooling profusely on my hands as I try to support him. "Are we done yet?" I ask. "Oh, yes. You can have him lay back now, sorry" says the doctor.
Then he begins to talk about the severity of the curve in his spine, why it has happened and what they can do to slow the progression. A brace is highly suggested. "Really?" I ask. "Can't we modify his wheelchair to a more rigid seat?" Hoping I'll be able to talk him into this. I let out a heavy sigh. "I'm afraid that treatment won't be aggressive enough for him" he answers back. Then images of a turtle's shell wrapped around my little boy twenty four hours a day, pop into my head. I fight back the tears. I don't normally have an aversion to crying in the presence of doctors, but this guy, he's new and I'm still trying to talk him out of his decision. The tears seem to soften his demeanor a bit and he continues his explanations in a soft, soothing voice that calmed me. He looked me in the eye, which doesn't always happen with doctors, and I believed him.
He walked us through the X-rays, showing us the dramatic difference in Dermot's spine in the last year and I knew. The turtle shell was in our future. I guess I can be grateful that he didn't suggest surgery right now, but I know that's in our future someday. For now Dermot will have yet another custom-molded plastic piece covering another part of his body.
Imagine for a moment tucking your son into bed. Remember to place the leg immobilizers on each leg with four Velcro straps for each leg. Don't forget to plug in his feeding pump to his mic-key button so he'll be properly nourished overnight. Place his neoprene hand guard on his left hand so he doesn't chew his skin until it bleeds. And now, carefully lift his growing body inside the shell and put his jammies on.
For tonight, Dermot is free. No equipment, just the feeding tube. I'm his mom. I can give a break tonight.