My Experience with Plagiocephaly and Torticollis by Reem Faruqui, who writes on her blog “Doodling through life…one color at a time” (http://reemfaruqi.com).
The word therapy scared me. I’d never heard of the words plagiocephaly or torticollis until my daughters 4 month appointment so didn’t know what they would mean for my little one. She needed therapy weekly to help strengthen her muscle tilt (torticollis) and flattened head (plagiocephaly). I had no idea that she had it so was a big surprise.
Now in hindsight I can reflect on the signs. Being a photographer, I now notice in her early photos her head is tilted to the right ever-so-slightly. She would always sleep with her head turned sharply to the right over her shoulder, further flattening her head. Furthermore, she hated tummy time – most babies (like my first child) dislike tummy time- but my 2nd daughter would mostly scream when placed on her belly and didn’t like playing much at all in her baby gym.
Treatment wise, my daughter received therapy weekly, then biweekly when she wasn’t making enough progress, and now every other week because she’s progressing. We decided to get a helmet because her head asymmetry was borderline severe. My insurance also covered a chunk of the helmet cost so that was a big help. I would have opted for helmet treatment even if insurance wasn’t covered as the helmet has made a significant difference- her head shape is not perfect but much improved!
Regarding asymmetry, her first scan showed the difference in diagonal lengths of her head was 12.8 mm. Anything with 13mm and above is moderate to severe. Her second scan after 6 weeks of wearing the helmet showed her symmetry down to 9.1 mm (mild to moderate asymmetry.) It felt really nice to see a change after such a small amount of time. The third scan 6 weeks later she didn’t have a growth spurt so her head shape hadn’t changed much.
Now she is wearing her helmet for nights and naps. It is nice to not have to wear the helmet in the day anymore! Questions I received while she was wearing the helmet: is she okay? Why does she have to wear a helmet? Was she in an accident? Did she fall? And once even , “Is she clumsy?”! Even if she was clumsy I wouldn’t put her in a helmet! You learn to grow a thick skin when dealing with all the questions. I learned that babies are more resilient than we think- my daughter adjusted fairly quickly to the helmet. It didn’t affect her sleep as much as I thought.
Visiting the children’s healthcare and seeing all sorts of children going through a variety of treatments, I feel lucky in that the helmet is temporary, and I am looking forward to her helmet being off for good: the day before her birthday is her final helmet scan and I think then she’s done! I can’t wait for her head to smell fresh like a baby again :)! Going through this experience has taught me patience and shows me what it is like to have a child who may look different and allows me to empathize with moms of children who wear Orthotics and Prosthetics on a daily basis.