When London was about 2 months old, David and I started to notice a flat spot on the back of her head. We had always heard this just happens in infants, but I made a mental note to ask her pediatrician at her next check up. David suggested we try to keep her off of that side of her head, so we tried more and more tummy time, and fed her facing the other way. David even McGuivered a pillow out of towels and tape to slide into her bouncy chair, to prop her head up. When her appointment rolled around, I very casually mentioned we were noticing her head was looking a little flattened in the back. After rubbing her head and neck, her pediatrician said she had torticollis; a word I had never heard of. And that the torticollis was causing her head to tilt, therefore causing the flat spot.
Congenital torticollis occurs when the neck muscle that runs up and toward the back of your baby’s neck (sternocleidomastoid muscle) is shortened. This brings your baby’s head down and to one side. This is known as congenital muscular torticollis. Experts don’t know exactly what causes the shortened neck muscle.
Her pediatrician said it was most likely caused by how she was carried in the womb before birth. He referred us to an in-house orthotic doctor, who we met with once a week for 30 minutes over the next two months.
Somewhere in the midst of this, I began going back through photos of London, and her head tilt became super noticeable to us, although all of our friends assured us it wasn’t that noticeable.
He noticed no physical change, and referred us to the rehabilitation hospital downtown. Being passed along and passed along was an extremely disheartening feeling. I felt a crazy range of feelings; fear, disappointment, and sadness.
When we got the call to schedule our physical therapy sessions, I was picking one day and time which would be our weekly session for basically our lives. I’ve heard others are like this, too, so if you’re making the PT appointment, make sure it’s a day that works for the rest of your life, basically.
We began seeing a physical therapist once a week at the rehabilitation hospital. The waiting room was the worst. Seeing children with obvious deformities was hard. I felt as if we didn’t belong there. After all, it’s just a little flat spot, would it even be noticeable once she had hair?
Before London’s first PT appointment, they took a scan of London’s head. The numbers were on the abnormal side, but the cranial specialist suggested we wait a few weeks, try out therapy, and see if she made any changes for the better.
The first thing they did in PT was take a picture tomeasure how much of a tilt London had. Her good side had a 35 degree rotation, her weak side? -5 degrees. Maybe we did belong there.
After a few weeks of therapy, which involved our amazing therapist Kate bouncing Lo on a ball, and swinging her on a swing while trying to stretch her neck and keep Lo from screaming her head off, and attempting to do the stretches at home, as well, we were scheduled for the second head scan. Kate had commented that week about how loose London’s neck muscles felt, and how she was noticing her more and more centered, so I shouldn’t worry about the scan at all.
They put London in a head sock. I can’t handle tension or feeling awkward, so I jokingly asked if there was a place in the baby book for baby’s first du rag. Joking turned into holding back tears as they finished up the scan and showed me a rendering of London’s head, confirming she would need a cranial helmet.
I wasn’t upset that she would look silly, I wasn’t upset that some jerk might stare or laugh. I felt an odd twang of guilt. I felt like I was going to be looked at as a bad mother by other parents for needing my daughter’s head “fixed”. Or maybe I felt like I was a bad mother for letting this happen to her. Either way, I held the tears in until I got home and sobbed all over David, who over and over again reassured me that it was not my fault, or his fault, or anyone’s, and that once this was all over, she was going to have the most symmetrical head in the whole family. Gold stars for his strength when I am falling apart.
Peyton also helped to ease the tension by demanding she get a helmet too, because “fair is fair!”
In therapy one week later, and with one week to go until our impending helmet-fitting appointment, Kate once again noted how well London’s neck was looking. I didn’t want to get too excited, because last time she said it, we ended up needing the helmet. But we decided to take another measurement of her neck rotation (note: they want these numbers to be as close as possible to be considered “symmetrical”). Her strong side stayed relatively the same, which I am told is good and normal, and for her bad side? The -5 degree rotation side? 20 degrees! I almost jumped with excitement! The weeks of PT and cranky stretching is actually paying off. Lo has since been moved to every-other-week for therapy, due to her newly strengthened neck.
Neck? Good. Head? Still flat.
Fast forward to this morning, London had her helmet fitting. Our hour-long appointment ended up taking nearly two hours to get the fit just right. We took Peyton to the appointment, so she would have a decent understanding about her sister’s helmet, and hopefully it wouldn’t be a big deal to her. You might already know, but three-year-olds can make big deals about a lot of things.
And here she is, day 1 of her helmet. As you can see, she isn’t letting it cramp her style. She really only fusses when we put it on or take it off. This is mostly our fault. I assume by week 2, we will be pros at the on/off maneuver, but right now, it’s a bit of a process. They have a strict “intro to helmet” policy, which is:
- Day one: One hour on and one hour off, off for naps, off overnight
- Day two: Two hours on and one hour off, off for naps, off overnight
- Day three: Four hours on and one hour off, on for naps, off overnight
- Day four: Eight hours on and one hour off, on for naps, on overnight
- Day five and beyond: 23 hours on and one hour off, on for naps, on overnight
Looking back at how upset I was at the helmet news seems a little silly today. I think the helmet makes her chubby cheeks just that much more squishable!
We are expecting to be rocking this cranial helmet for the next three months, depending on how quickly London grows. Fortunately, there are companies like Bling Your Band who offer fun ways to decorate these helmets, and are helping to make our next few months a little more fashionable. They helped me pick a vinyl design and customize my color options! The application process is super easy, and I sealed it with ModPodge to keep the design in place!
Note: I’m not a doctor or expert. I’m just a mom who would like to help other moms by sharing our experience. Every baby and experience is different. If your baby is starting their own helmet journey or if you’re just curious, I hope this helped answer a question or two!