We are currently treating our 3 and a half month old for a severe case of torticollis and plagiocephaly (known as flat head). This is part 1 of our journey.
Our baby always looks to one side. The same side and only that side. This started very early on. Around 3 weeks old, we noticed she preferred looking to the right and stopped altogether turning her head to left. We could not get her to turn it when sleeping, when doing tummy time, when holding her – ever!
At 5 weeks old, we discovered a significant size lump on the left side of her neck.
Being alarmed, we immediately took her to the GP.
The paediatric GP advised that lumps on babies necks are pretty normal and babies tend to prefer one side. The other advice was: “It is nothing to worry about. There is nothing you can do as parents, she will grow out of it. Just keep an eye. We can check it at her 8-week appointment.”
This is where I start to get a little angry bit when I recall out 5 week visit and why I feel so compelled to share this journey we are now on with infant torticollis.
But we didn’t know any better, so we left it and knew we would get it checked again in 3 weeks time.
Within those 3 weeks, nothing improved, if anything the lump got bigger and now took up the majority of the left side of her neck and her ability to even remotely turn her head both directions entirely diminished.
At this point, we also started to worry about her getting a flat head, as for the first 8 weeks of her growing life, she only slept in one spot, putting pressure on the same spot on her head for 18+ hours a day.
At the 8 week check up, we were told the same advice. “She is a baby. A baby always looks to one side as they prefer it. She will grow out of it. Do more tummy time.”
Trust Your Mom Gut
This time we knew better than to just wait. Something was wrong. We took her for an ultrasound. Within seconds, the paediatric radiologist knew what was wrong.
The lump on her neck is called fibromatosis colli. The sternocleidomastoid muscle on her neck is injured and inflamed, inhibiting her ability to turn her head to both sides.
Fibromatosis colli leads to a condition in babies called infant torticollis.
Our little Miss has severe Torticollis
What is torticollis?
Infant torticollis is the tightening of the neck muscles. Babies are typically born with it due to their positioning in the womb, although some can develop it once they are born.
Where did the Torticollis come from?
In every baby, torticollis forms in different ways, but for us it was pretty clear where it came from when the radiologist began asking a few more specific questions. These were the indicators that lead us to this diagnosis:
- Our baby always looks to one side.
- I had an extremely lengthy labour (ahem, 56 hours). So for 56 hours, our Miss was fighting back against contractions to protect her head (think Night at the Roxbury head bobbing, but for 56 hours at 7lbs!).
- After a lengthy labour, there was a difficult, assisted delivery. Which likely amplified her condition, as her neck may have been tweaked even more on the way out.
- Her one eye is smaller (the eye on the same side of the lump is the smaller eye).
- Her face has asymmetries in it.
- She has a large lump on her neck, which is actually not a lump, but an inflamed sternocleidomastoid muscle.
These key indicators made it very clear that our little one had torticollis – and unforuntately – a severe case.
Ok, so now what? What to do?
The peadatric radiologist referred us to a physiotherapist to treat her torticollis.
We had our first appointment with the physiotherapist at 11 weeks old.
At 11 weeks old, the severe case of torticollis had also lead to a plagiocephaly – or flat head.
The physiotherapist also knew within seconds of meeting her what was wrong with her – all the same indicators that the radiologist listed were the same indicators the physiotherapist picked up on as well. The most obvious being, the baby always looks to one side.
I was so gutted because he said had we caught this at 4 or 5 weeks old, we would have been able to save it from becoming a severe case of torticollis AND she would not have developed flat head from it.
Treatment for Torticollis & Flat Head
Torticollis can be treated with physiotherapy.
Flat head, or plagiocephaly, is typically treated by an Osteopath. In severe cases that cannot be self corrected, a cranial helmet is used to correct the shape of the head. These are often referred to as baby helmets, cranial helmets or doc bands.
In our case, we found a Physiotherapist who is also an Osteopath so is treating both conditions at once.
Due to the severity of her case, we are seeing a Physiotherapist twice a week right now.
For her torticollis, he does a variety of stretches and exercises on her neck and entire spine to improve mobility, as the root cause of the condition is not limited to just neck movement.
I then do these stretches with her at least 4-5x a day. In our 14 week old baby schedule, I have outlined where we fit these into our day.
For the plagiocephaly (flat head), he does a variety of repositioning exercises on her head and skull. These, I cannot mimic, nor do I try. This is what the professionals are for!
Our Journey: Part 1
This is part 1 of our journey and we are in the very early stages.
Within the first 3 weeks of doing physiotherapy we have seen some amazing results:
- Our little Miss can now turn her head both directions. This was a HUGE parenting win when she first turned her head the other way. While this is still painful for her to do and takes her A LOT of effort she is at least able to do it, although only slightly.
- When I put her down for a nap, she will turn her head to the left side now. Although she turns in back once fully asleep, the fact that she can even stay with it turned for a small amount of time is a huge win.
- Her flat head has already decreased from 12% to 8-9%. She was in the highly severe scale at the beginning, now she is creeping into the lower severity scale.
Will she need a helmet?
We have no idea! This is our journey and I will continue to share her progress.
Our goal with the physiotherapy and daily stretches is that she is able self correct both the torticollis and the flat head without needing helmet therapy, but in some cases, this just isn’t possible.
We have a couple more months to see how she progresses before needing to decide.
Amazing Resource for Parents
I highly, highly recommend every parent follow Occupational Therapist, Rachel Coley on Instagram.
I came across her while hunting for other stories of #torticollis and really wish I came across her when our little one was 3 weeks old, as we would have taken action much quicker.
One of the things she advocates for is that GPs don’t tell new parents to wait and see what happens. She advocates for getting help right away.
She also has amazing insights on preventing torticollis, flat head and baby development organized by age on her website.
The Good News
Torticollis and plagiocephaly are treatable with no medical intervention.
While I wish we had an answer sooner, I am so grateful we are dealing with an issue that is entirely treatable.
Does your baby always look to one side? Do they have a slight neck tilt? Be aware early so you can catch and treat potential torticollis before it becomes a bigger issue.
I will leave you with this: Trust your mom gut, it knows best.