Owen (and James, to a much lesser degree) suffer from torticollis. Their left ears tilt toward their left shoulders and they always look to the right. As a result, Owen’s head is misshapen. His right cheek and forehead are more pronounced (and, as such, more kissable, I say).
Owen started physical therapy early September. We took him to a chain therapy center recommended by our pediatrician. The therapists there were incredibly kind and if Owen was a teenager, I truly believe he would have received adequate—if not excellent—treatment. But he was an infant. Looking back, I should have known the place wasn’t an ideal fit. Everyone who worked there doted on him. I asked, at one appointment, if they saw many babies. They said no (hence the doting). They claimed he was doing much better and only needed to be seen monthly.
Two weeks later Owen finally had his appointment with a plastic surgeon at Cincinnati Children’s Hospital (the wait for an appointment was quite long). This is recommended for all babies struggling with plagiocephaly, which means abnormal head shape. While the National Institute of Health’s Back to Sleep Public Education Campaign has greatly reduced the occurrence of SIDS, it’s greatly increased the occurrence of plagiocephaly. Newborns are spending too much time on their backs. The solution? Back to sleep, yes, but much more tummy time and much less time in car seats, bouncers and swings.
Part of our appointment at the hospital involved an educational seminar. We were told about the important of tummy time, proper positioning (exercises) and ridding our house of our beloved My Little Lamb swing. I admit, I left that seminar angry. I felt like I was being blamed—that Owen’s misshapen head was my fault. I felt like a terrible mother.
I don’t know why Owen has torticollis. I do know it’s more common in twins. I also know that while I tried to do tummy time with him as much as possible, I could have done more. And with a toddler and twins, we used our swing—a lot. I’m no longer angry at the nurse who gave the educational seminar. And, most days, I’m no longer angry with myself. It is what it is.
Back to Cincinnati Children’s. After the seminar, Owen’s head was measured and he was seen by a plastic surgeon. Turns out, his plagiocephaly was only borderline for needing a molding helmet. In addition, we were told, helmet therapy is best suited for babies with flat spots on their heads. Owen doesn’t have a flat spot. Rather, because of the torticollis, one side of his face is simply more forward than the other. Weekly physical therapy was recommended instead.
We pulled Owen out of the chain therapy and into Cincinnati Children’s therapy—the only opening was in Mason (a good half hour away). I took it. And am so happy I did.
Here’s Sadie working with James.
Sophie loves going to therapy with the boys and she now knows the drill: shoes off, hands sanitized, one toy from the toy cabinet (usually kitchen supplies for the play kitchen) and a sticker at the end for good behavior.
And here’s Sally working with Owen (the exercises often are tough for him).
Sally is our main therapist and we love her. She’s smart. She works Owen hard but also provides many hugs, kisses and let’s-take-a-breather-so-you-can-stop-crying moments. She’s so incredibly patient with Sophie (who loves to “help”). And me (I’m always late). And Owen (even when he’s teething and his muscles are tight and he therefore cries the entire time). Sadie is a student, working with Sally. She spends a lot of time with James, who is seen every other week. You would never guess her to be a student. Her insights and exercise explanations seem to come from someone much older. We’re grateful to both of them.
For awhile, Owen was in therapy twice a week. (Allow me a woe-is-me moment: Hour-long appointments a half hour away require much planning and patience plus there’s a $20 co-pay per child per visit.) But now Owen’s down to once a week. He had a follow-up appointment with the plastic surgeon and a molding helmet was officially ruled out. But, in addition to the PT and regimen of exercises at home, he’s required to wear a Benik vest, more accurately called a Benik Contralateral Torticollis Bracing System.
side view—it’s this strap which keeps his head midline
It’s not his favorite thing. It greatly restricts his movement and he’s had to relearn basic things he’s been doing incorrectly, like rolling. He’s most upset when left on the floor, alone (which I try to do for as long as I can, so he can relearn those things, but usually I can stand the screaming for only about 10 minutes). We strive for about four hours of wear time daily.
A Bumbo and blocks help.
His big sister helps.
And working on a puzzle with all his siblings helps, too.
This bracing system, along with positioning, exercises and physical therapy, seem to be helping. I know, someday, this will all seem like a minor blip in our lifetime together. But right now, it seems so very much more than that. But I’m thankful, for many things. I’m thankful that, medically, this is all we’re dealing with right now. As someone who wore back braces in high school because of scoliosis, I’m thankful Owen’s wearing this bracing system now and not as a teenager. I’m thankful for Sally and Sadie and all the wonderful people who work in the physical therapy department at Cincinnati Children’s Hospital in Mason. I’m thankful for my mom who will often watch Sophie (or come to the appointment and help out there). I’m thankful that the therapists are so willing and equipped to handle siblings when help is not available. I’m thankful for Wendy’s drive-thru (the appointments are at 11am—Sophie and I munch on lunch during the long drive home).
Finally, I’m thankful for this blog as a means to educate. Maybe, maybe, I could have given Owen all the tummy time in the world and never once put him in a swing or bouncer and, maybe, he’d still have torticollis. But (and it pains me to think this) maybe not. So if you have a baby, and he’s awake, put him on his tummy. Even if he fights it. And reserve the car seat for the car. I know it’s a pain but when in a restaurant, take your baby out. Hold her. Limit bouncer use. And swing use. (It’s so hard, I know. We, literally, put ours in the attic so we wouldn’t be tempted to use it.) Limit high chair use and stroller use, too. It’s funny, all these things we have that parents 100 years ago didn’t—as usual, more is not always better.
I think James will be released from PT soon. And Owen should have to wear his vest for only six months, if all goes well. I actually think it’s kind of cute. I call him my little scuba diver. Sophie often cries if he’s in it and crying. But many days, when I put him in it, she suddenly shows up wearing a hat, too.
“When you realize how perfect everything is you will tilt your head back and laugh at the sky.” —Buddha