Our Torticollis Experience | Birth to Six Months

Isabella has something called congenital torticollis. I began noticing it when she was nine weeks old but after re-examining younger photos of her, I saw it there as well. Torticollis is a condition in which an infant holds his or her head tilted to one side and has difficulty turning the head. In congenital torticollis, the muscle that extends down the side of the neck – the sternocleidomastoid muscle — is tight and shortened.¹ She tilts her head toward her right shoulder and always has. This, we think, is due to her position in the womb, which is why I am very thankful that she was born via planned cesarean (at 38w4d) instead of by natural birth. Coming down the birth canal could have caused more trauma and/or pain to her, not to mention her size possibly causing issues even making it out!

When we first had the tort diagnosis, things were a little unclear. We weren’t sure but there was a possibility that she had ocular torticollis instead of congenital torticollis. Ocular, meaning that her eye was the reason for the tilt (possibly a tilt to correct her vision). See, her right eye (at times) appears to shift toward her nose, depending on which way her head is turned. Her pediatrician first noticed it at two months but she said most eye issues resolve on their own by four months. At Isabella’s four month check-up, it was still very much present so the pediatrician sent us to an ophthalmologist. I thoroughly scared myself by looking into strabismus, a condition where the eyes are misaligned and surgery is required. I was certain she had it because she seemed to be displaying all the symptoms of it. She slept like a child with ocular torticollis; she was not limited to one direction but moved in both directions equally.

This made me think that she couldn’t have had congenital tort because otherwise she would have only been turning the way that was most comfortable. She also showed no preference while breastfeeding which is something that many congenital tort babies do because one side is less comfortable than the other.

At any rate, we went to the ophthalmologist and he saw the way her eye appeared but the results of his exam were that she had/has pseudostrabismus. Pseudostrabismus refers to a false appearance of strabismus caused by an optical illusion.² This was the diagnosis because of the way light reflects off her eyes: it is in precisely the same spot on both eyes which means that the eyes are perfectly aligned and normal. She also had an eye exam, complete with dilation, which showed her eyes are in perfect health.

The reason for the appearance of misalignment in babies is often because the bridge of their nose is wide. So! With that out of the way, we were back to not knowing exactly why she had torticollis but we knew it wasn’t ocular (even though matching behaviors were still present) and she no longer needed surgery! A side note: her head tilts to the right and it’s her right eye that appears slightly out of alignment- the ophthalmologist said that if it were true strabismus, her head would tilt the opposite way of the eye, not the same!

Next, her pediatrician gave us a referral to a physical therapist. At this point, she was four and a half months old. She responded well to the exercises Ryan did with her at PT and I felt really positively about it. But I was still feeling unsettled about not knowing the exact cause so we went back to the pediatrician and we saw a different (more experienced) doctor. He was very reassuring and said that her case was mild and it should resolve on its own by putting her to sleep on her left side and doing physical therapy. He felt it was due to her position in the womb and nothing more. He did put in an order for an X-ray for her to rule our any abnormalities.

Thankfully, everything was normal and so we were encouraged to just continue with physical therapy.

I worked with her at home but she resisted most of the exercises Ryan had taught me! So instead, I just encouraged her to turn her head to the left by putting on the tv or positioning her seat to the right of the action in the house.

We also did more tummy time. She really struggled (and continues to) turn her head to the right while on her tummy but she can easily turn to the left.

A side note: she was a bit delayed (in my parenting experience) and didn’t raise her head off the floor until she was three and a half months old. I’m not sure but I think it was due to the torticollis. Her doctors weren’t worried so I tried not be. It turned out to be nothing but a delay.

At physical therapy, Ryan was impressed by her quick improvement from one appointment to the next.

The day she turned five months old, she held her head straighter than she ever had while I was holding her. 🙂

But she regressed some right before she turned six months old which I think was partly due to the fact that we had switched her to the crib (we had co-slept until that point) and she would turn to her right immediately upon being placed in her bed. Kind of “un-did” a lot of our work every time she slept. Apparently, she hadn’t heard the pediatrician say that she should sleep on her left!

I’m seeing improvement again, though, so it was a temporary setback. When she’s on her tummy, she holds her head straighter than before.

She has also started sitting up with little to no assistance. Everyone who knows her is commenting on how much straighter she’s holding her head.

She went to the pediatrician yesterday for her six month checkup and they were very happy to see how well she’s doing, not only in regards to torticollis but in all areas of growth and development. She’s measuring 27inches long and weighs 17lbs9oz! No, stay little my sweetie!!

Resources

¹ OrthoInfo Congenital Muscular Torticollis (Twisted Neck)

² AAPOS Pseudostrabismus

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I am a happily married mom of five living in the beautiful state of Georgia.

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