Four weeks into the little life of my precious firstborn Julia, we had a scare.
Julia had woken for a 4 AM night feed and as I settled on the rocking chair to nurse her, the light hit her neck at just the right angle to reveal a lump the size of a large green grape.
The electric bolt of panic shot through my body and left my head on fire and ready to explode.
To me “lump” equated to “cancer” and I scrambled to find the number of her pediatrician.
(We thankfully had access to a pediatrician for Julia because she was born with a small hole in her heart which qualified her to be seen regularly by a pediatrician. Where we live in Canada, children do not get to be seen by pediatricians unless they are specifically referred for a serious medical condition. Don’t get me started on that… I could rant for a year about that injustice.)
I called the office and had the doctor paged.
The next ten minutes, while I waited for his call, had me tightly gripped in panic as I envisioned the unspeakable.
But he called and with the calm brought by twenty years of treating children asked a few simple questions.
“Where was the lump located?” — In the muscle on the side of her neck.
“Does she tilt her head?” — We weren’t really sure since she couldn’t yet even hold her own head up… but yeah, maybe she did tilt.
“Can she turn her head completely to both sides?” — Oh… now that you mention it, maybe she doesn’t turn it to the left.
The doctor had no doubt. It was torticollis and we weren’t to worry, but bring her in to see him in the morning to confirm.
And sure enough, that doctor knew his stuff. Julia did have torticollis and a rather severe case of it that took almost two years of physiotherapy to solve.
But thankful we were that the lump was not life threatening, but a hematoma that would heal.
Now our little two-year old Julia runs around as straight as an arrow.
We thought neck stretches and alignment exercises were behind us. But again Janice and my ‘twin-ness’ has struck. At Olivia’s two month checkup, she was diagnosed with torticollis!
She has no mysterious and scary lump, but she holds her head in a tilt and can’t turn her head to the right.
And yes… you guessed it… Sophia didn’t want to miss out on the fun of physio so she has also decided to tilt.
We had a twin physio session the other day with the amazing lady who helped straighten out Julia.
It turns out they both have torticollis, but Sophia’s is still quite mild. Olivia on the other hand does have a moderate case that will require a strict regiment of stretches and exercises.
We’re just so thankful that we knew exactly what pediatric physio to contact this time. Our previous experience with Julia was extremely frustrating as we wasted months with an inept physio before we finally got quality help.
So now our little babies will be seeing the physio and working out their kinks together.
In case you’re like we were, and have no idea what torticollis is… here’s an explanation:
Torticollis (also called congenital muscular torticollis) is a condition that causes a baby’s head and neck to tilt to one side. It affects about 2 percent of newborns. The cause is unknown, but doctors suspect that when a baby is positioned in the uterus so that her head is tilted to the side and her neck is down, the blood supply to the neck is cut off. This results in some tightness in one of the two strap (or sternocleidomastoid) muscles that connect the breastbone, head, and neck, and allow a baby to turn her neck. -www.BabyCenter.com
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{ 23 comments… read them below or add one }
My daughter also had this. Unfotunately, I didn’t know to look for it, and the peditrician didn’t notice. Her head became deformed on the left side from always sleeping on it. Her forehead started to push forward on the left side as well. She was fitted for a doc band, and thankfully, it has helped tremendously. Good luck!!!
Goodness! I will definitely be praying for you guys! What an experience!
Oh my! I’ve never even heard of that, but I’m grateful to know about it now in case one of my future kiddos get it. I hope your new precious babies can get over it just like Julia did!
What a scare! Glad to know it wasn’t serious and you did us all a favor by educating us on this. I didn’t know about it. Thanks.
How scary that must have been. Glad things are going well.
Wow- I have never heard of it! SO thankful that all is ok and that you have each other for support!
Steph
My son also had torticollis. We had physical therapy for 8 months and he ended up wearing a neck brace for a few months. He is completely straight now at 2, unless he is sick and his head tilts slightly. His was possibly the result of being breech, his head was stuck under my ribs for the last month of gestation. Good luck with PT. I hope the new little ones heal quickly!
Oh No, I am so sorry!
Thank God that you knew what to look for. Our kids always seem so fragile.
I didn’t realize you were Canadian too.
I am glad that that scare turned out to be nothing very serious and that something could be done about it. I’m also glad that with your newborns you were prepared for this and are able to start correcting it right from the get-go.
Oh Sweetie I will keep you in my prayers as the though of you and your baby and your sisters baby comes to my mind. I am so glad you had access to help.
Thank Heaven!
as a pediatric ot, i know it is so treatable when discovered early. good luck- i know they will be fine with such attentive moms. the stretch-cry is no fun though!
Oh, how scary! I’m glad to hear that you have support this time around!
P.S. I’m intrigued by your comment about how Canadians in your area don’t regularly see pediatricians. Do you take your babies to another kind of specialist for check-ups, shots, etc.?
My preemie (Little Monkey) had Torticollis. He would only turn his head to the right. Since he was already getting PT because he was developmentally delayed they just added neck exercises to his regimine! I still struggle with it myself . And continue to do the stretching. My head tilts and I can’t turn my head to the right very well. But that is because they never caught it when i was little. At least they caught LIttle Monkey’s when he was small.
You are not alone – my daughter had this – we noticed at 2 months that she wouldn’t turn her head to looka t you and her pedi diagnosed it. After 3 years of occupational and physical therapy she was fine! In fact – she’s now 6 years old and I sometimes even forget she ever had it – the key is a good pediatrician and parent’s pointing out when things don’t look right!
It’s amazing what our little ones go through! Good luck!
I never knew that about pediatricians in Canada. That is weird
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I’m pulling for you all that everything will work out fine and the babies will do as good as Julia did. *hugs*
Princess had torticollis that required 6 months of physical therapy. I was, and am grateful that it was such a benign diagnosis but those sessions with my screaming infant were not pretty.
And it interfered with breastfeeding until she was diagnosed and I was finally aware that she couldn’t turn her head to one side or tilt it to the other. A simple change of feeding positions saved us but it made being a first time mother a bit more challenging. Good luck with the girls!!
I’d never heard of this until my latest addition wouldn’t turn his head to the left. I thank God that his case was mild and, at almost three months, is pretty much unnoticable. He has wound up with a bit of a flat spot on his head that the ped didn’t sound too concerned about (for now she just said we need to make sure he sleeps with his head facing the other way).
Thank goodness you found someone who you can trust to tend to your babies!
Thankfully we’ve never had torticollis. We did have a scare with our last baby, as his head looked like a Klingon’s for the first year. He had ridged sutures (where the skull plates overlap). His were significantly noticeable, and we were worried that it could become a problem with the plates fusing in the wrong positions. Thankfully, he eventually grew out of it, but it was still scary. We did have the fun of calling him lumpy for the first few months though
Wow, scary! Thank goodness it was something mild and treatable if it had to be anything at all.
What stretches do you prescribe for torticollis? I’m a new COTA and I have a very tiny 7 month old on my case load who has it – always looking for new stretches to try.
thank you for your work