Torticollis: The Baby in the Little Blue Helmet

 

Torticollis

“It’s just a flat spot, it’s totally normal, especially given the size of the babies,” the pediatrician assured me at Brandon’s 1 month checkup. Brandon was my “small” twin at 7lbs 14oz and he had laid, head down, under his 9lb 15oz sister for 9 months.  I could imagine it was cramped considering I’m 5’4”. (Yes, that’s 18lbs of baby… I was as big a HOUSE).  I had seen flat spots before on babies. Brandon’s head was almost a diagonal line on the back, and I was concerned.  As the next few weeks progressed, I noticed in pictures that his face seemed to be drooping to one side, one chubby little cheek was hanging lower, and his “flat spot” definitely wasn’t rounding out.  In a world of “but-I-read-it-on-the-internet” diagnosing mothers, I didn’t want to sound crazy, so I just brought it up casually at the 2 month appointment.  The NP called in a Dr to have a second look at Brandon.  She told me it definitely looked like he had torticollis, or a shortened tilted neck muscle.

Torticollis Before

When a child has severe torticollis they develop may plaigocephaly, or a misshapen head which can lead to facial asymmetry.  The office helped me set up a visit with a pediatric physical therapist (for the next day) and wrote a script for a series of skull x-rays (which you are not allowed to be in the room for by the way).  The PT they recommended was about 25 minutes away.  She wanted to see Brandon 2-3x a week and our insurance would only cover 10 sessions.  On top of this I would need a baby sitter for Natalie (his twin) and their 2 ½ year old brother 3x a week now.

Brandon’s PT was amazing. She would “work” on his neck until he was inconsolable, which sometimes meant driving 50 minutes round trip for a 5 minute session if he was crabby.  I was given a page of exercises to do at home – and in the meantime, there were to be no swings, no bouncers, and keep toys/stimuli on his right side, plus I learned how to safely roll a towel to position his head for sleeping.  Think of how much you loved the  swing or bouncer with one infant, and imagine not being able to use one with two infants.

When the PT found out our insurance coverage was limited, she mentioned something I had never heard of – EIS.   EIS is “Early Intervention Services”, which is available through the county where we live.  A child that is in need of therapy (not limited to any qualifying or low income level) can qualify for in-home treatment, free of charge.  It is a process, and after the initial call, we waited 2 weeks for a meeting, then another week for an in-home assessment of Brandon’s neck, and then 4 weeks to be matched with a therapist.  Over those weeks he got much stronger but the torticollis was stubborn.  If we couldn’t improve his condition, his “lean” could affect his ability to crawl in the upcoming months. So on top of neck exercises, Brandon had a set of core exercises to do as well. As soon as he looked to the right his neck would snap back to the left like a rubber band.

I asked every professional we came in contact with, “he won’t need one of those helmets, right?”.   I knew it was common in severe cases but I didn’t know if it was something I could manage.  I am an extremely self-conscious person and going out in public with 3 kids under 2 ½ was getting me enough side glances and “wow you really have your hands full” comments.  Meanwhile the medical center called us about his x-ray results. They needed Brandon to see a neurosurgeon at Children’s Hospital.  I called my husband sobbing.  Neurosurgeon?  It sounded so scary, especially looking at this tiny baby in front of me.

We met with the Doctor, who in typical Dr fashion had “good news and bad news”.  The good news; the x-rays looked great, no signs of any major problems. The bad news; he would classify Brandon’s plagiocephaly as severe.  My stomach dropped when he started to discuss “pressure bands” (a helmet is a helmet- let’s not tiptoe!). The helmet is worn 23 hours a day. He said he could not tell us one way or another, as far as what to do.  As part of the plagiocephaly, Brandon’s forehead was beginning to protrude slightly on 1 side.  He said that aggressive PT and repositioning could fix Brandon’s head but the helmet was an option, and an expensive option at that – it is considered mainly cosmetic, so it is hard to get approved by insurance.  That is why he doesn’t like to “force” it on parents, he said.  I had done my research and I knew that left untreated, the plagiocephaly/facial asymmetry could lead to things like vision, sinus and hearing problems, speech issues or TMJ. There were also simple things like glasses not fitting right, having an unsafe “gap” between the head and sports helmets. The Dr recommended we go home and talk about it.

The thing about the helmet is that it is time sensitive.  The sooner a baby gets it on, the more effective and quickly it will work, 4-6 months being the optimal age.  We were both pretty frustrated with the Dr’s wishy-washy opinion.  I cried a lot.  It was a cycle of crying.  I would kiss Brandon’s head and cry.  I thought about that sweet smell in their baby soft hair.  Then I would think of all the really sick kids at that hospital we saw and feel guilty for being so overdramatic about a helmet- and then I’d cry again. The twins were still waking at night- could I possibly handle more waking if the helmet disrupted his sleep?  I’d think about Brandon’s 1st trip to Disney and how in all the pictures he would have a helmet on and I’d cry.  All the compliments he gets on his hair… and now no-one would even be able to see it… and cry.

After discussing with Brandon’s new PT, my husband and my family we decided to go ahead with the process.  I am not a risk taker.  If there was even a small chance this would affect him later in life, I wanted to be able to say I did everything possible.  Insurance will cover cranial orthotics at 100% if they are deemed medically necessary.  If not, the cost would be somewhere around $3000 out of pocket.  I spoke with the neurosurgeon’s office and they sent over Brandon’s x-rays and evaluation right away.  The next day I had to take him to the orthopedics office to have photos and dozens of head measurements done.  He was not a fan.  Not even 24 hours later, we got that call that Brandon’s condition was classified as severe and we would be 100% covered.  They wanted us in the next day for a head casting.

They sat Brandon in just his diaper in a little Bumbo seat. He was looking around being all cute and sweet as usual… then the “fun” started. They put him in a giant cape/bib and a little face mask kind of hood. He went from happy to furious in about 10 seconds and cried the rest of the appointment as they literally “casted” his head with plaster.  It was pretty heartbreaking to watch him fight and cry.  It only took about 15 minutes but it seemed to take forever.  It was so messy and I had to keep wiping it from his little eyes/mouth. He was a real trooper.

Torticollis helmet casting

Every child’s skull corrects at its own pace, so we were told that the helmet could be on for 8 weeks, 8 months or even up to a year. Somewhere in my silly mind I thought we’d walk in, they’d slip it on like a little hat, and we would go merrily on our way.  HAH!  The helmet is custom made to the child’s head but needs several “trimmings” during a fitting to make sure it fits 100% perfect.  They send them a little snug so that there is room for adjustments.  So when they put (ok, squeeeezed) this helmet onto Brandon and he couldn’t even open his eyes and his ears were folded my heart fell into my gut.  It looked so much worse than I imagined and he looked like he was in pain.  Then I found out it needed trimming.  Phew.  They marked it for adjustments, pulled it off (which I was 99% sure at the time was going to break his neck, I swear) and trimmed it.  Came back and tried it… still needed additional trimming.  This happened SEVEN times.  Brandon screamed every time the helmet went on and every time the helmet came off.  Arching his back and thrashing his arms.  It must be tricky to trim because it needs to be tight enough to apply pressure to the misshapen parts but not rub too hard.  Also, due to Brandon’s severe torticollis- his helmet was rubbing his neck/shoulder so we needed more adjustments than usual.  In between trimmings I rocked him, he held the strap of my shirt with a death grip and did that gasping-for-breath-from-crying-too-hard baby cry.  I felt like as soon as he got calm they would come back in to jam on the helmet.  You know that feeling where your tears are building up and they’re super hot but you promised you wouldn’t cry, so you open your eyes wide, give some quick blinks- maybe blot the corners with your fingers?  Uh huh. I watched him in the mirror on the drive home as I cried. He didn’t seem to care it was on at all.

Torticollis Helmet

I remember bringing him home and my then 3 year old saying, “wow mommy look, Brandon is like a hockey player”. Kids are the best. After just 2 hours of wearing the helmet, Brandon was covered in sweat. The helmet needed to be wiped after every few hours with alcohol (and MAN was that thing stinky after a few weeks).

In the midst of all this, I stumbled upon “Bling your Band”. They sell helmet decals for the pressure bands. I got Brandon a little tow truck sticker set that said, “Just fixin’ my flat” and a decal with his name for the front.  He even won a “cute baby of the month” contest on their Facebook site wearing his band.

Torticollis Helmet

After months slow progress with PT I was shocked at how quickly the band was changing his head shape. After just 6 weeks I could already see it rounding out! At this point we were still doing 2x a week PT, 2x a week helmet adjustments and were ready for a check in with the neurosurgeon.  We did have to take a 2 day break due to a pressure sore Brandon developed, which is totally normal.

Torticollis pressure spot

The neurosurgeon mentioned Brandon’s progress was remarkable and he wanted to see us back in 6 weeks for a possible “graduation evaluation”.  That put us at 1 week before Christmas and it was all I wanted was to be done with the helmet.

For helmet moms reading this, it was around this time I found mint scented rubbing alcohol to clean the helmet- and it made a HUGE scent difference. 6 more weeks flew by. We made it through our trip to Disney.  I laughed as they gave his helmet the swab test for drugs at the airport.  I gritted my teeth as a woman said to my mom (holding Brandon), “oh wow, he’s so cute in the helmet… what’s wrong with him?”. I smiled as we took off his helmet and brushed his sweaty hair aside, revealing a nice round head so he could meet Mickey Mouse for the first time.  Sure enough, Brandon was released from his helmet, the 3rd week of December. He crawled and walked within a normal time frame and even “graduated” PT at 14 months old.

I haven’t thought about that helmet in months, but I’d be a liar if I said I didn’t cry writing this.  I get emotional looking back at the pictures from his head casting, his first fitting, seeing months of matted down hair and a sweaty face. He retained his new head shape and is the most gorgeous little 2 year old boy I have ever seen.  I’m so glad we made the choice we did to use the pressure band. We keep his helmet in a little box in the basement. It looks so small now… and so dirty.  That helmet is a symbol for me of an important lesson I’ve learned as a mom; we have to put aside our own fears, emotions and insecurities to do what’s truly best for the precious, tiny people we love.

TorticollisBrandon, age 2


Melanie

Melanie White has been married to her best friend for 6 years. They have 3 beautiful children, a 4 year old boy and a set of 2 year old boy/girl twins.  Melanie has her B.S. in Secondary Education and Human Ecology.  She is also a Certified Personal Trainer and Bootcamp Instructor at New Body Elite Training in Hamburg, NY.  Her hobbies are healthy cooking, fitness and spending time with her family.

 

 

 

 

Comments

  1. 1

    I have a question for you. My son also has torticollis and was just recently fitted with a helmet for plaigocephaly. He has been in PT since he was 1 month old (he will be 6 months next week) and his neck has improved SO much. He had a very severe case and even though he is almost to full range of motion he still prefers his left side. Now that he is moving around, I have no control which way to turns his head to sleep at night and he is really fighting his neck stretches. he is also too smart and will turn in a complete circle so that his toys are on his left and he can play that way. I am worried that he will regress once he “graduates” from PT. Any tips?

  2. 2
    Ashley Duque says:

    My story is almost the exact same except my girl/boy twins were only 3.8 lbs and 2.5 lbs. Landon (and it rhymes) still has his on and we were just told yesterday we would probably have to buy a new helmet because he is out growing his :-( and yes has anyone found the mint alcohol? That is a must find!!

  3. 3
    Melanie White says:

    @Emilee- Brandon’s PT let us borrow a sleep positioning pillow. It looked almost like a donut and held his little head safely in place. The sleep positioning is frustrating. I just tried my best to peek in on him and gently turn his head any time I was up during the night.

    @Ashley- the mint alcohol was right at my CVS!

  4. 4

    My daughter has torticollis & plagiocephaly also… and had surgery at 4 months due to having a condition called craniosynostosis (skull bones fused at birth which wouldn’t alllow brain to grow w/o deformaties) Talk about crying my eyes out! Surgery was a success and she was such a trooper! I was extremely impress with how my daughter handled the recovery and with her doctors. After her incision healed she was fitted for her first ‘helmet’… we had skin issues for the first 2 weeks or so with her skin getting used to the band but after that the band did wonders! We didn’t like the idea of a ‘helmet’ either but let me tell ya it did wonders! She is now on her 2nd band (7 months old)… due to one area (out of the many areas the band corrected) is being stubborn and the cranio surgeon wanted better results to that one area. Yes, the band does get sweaty and smelly, especially in the summer, but I found if you clean it with alcohol regularly and let babies head & band completely dry out before putting back on it’s okay. … and her head seems to have acclimated to the band and doesn’t sweat as much. My daughter fights the stretches too… I try the best I can and do worry it’s not going to correct. Her torticollis isn’t very severe… actually the band place picked up on it when they were assessing her… but the PT said torticollis doesn’t come back once it’s corrected… I hope that’s the case! Good luck to you ladies and those babies!!

  5. 5

    hey there, i came across this post from facebook – Bling Your Band posted it. It’s where we get stickers for my son’s helmet. I couldn’t help but notice from the pictures that Mark from Great Lakes Orthopedics Labs was in the shot of your son getting his head casted. Small world (we’re in East Aurora). My son goes to Great Lakes as well for his helmet-work. (He was born with metopic craniosynostosis and needed surgery and a helmet) We just love the crew at Great Lakes. They recommended EIS to us as well and has helped us IMMENSELY… From the PT to assistance with the cost of the helmet. We are forever grateful!

    Your son is a cutie pie with a beautiful noggin! :)

  6. 6
    Melanie White says:

    @Beth- too funny, it IS a small world! I had an AWESOME experience with Great Lakes, I can’t say enough good about Mark the rest of the staff.

  7. 7

    I’m so happy to hear your little adorable guy is doing well! Being a mommy is hard work and it sounds like you are doing a PERFECT job.

  8. 8

    you son is so cute and i love the way you blinged his helmet. “Just fixin my flat” to cute!

  9. 9

    I had never even heard of the term torticollis before. Thanks for the education! I have to say I love that helmet with the flat fixin’ graphics. It’s nice to be able to add a little humor to a difficult situation.

  10. 10

    I have heard of torticollis but did not know much about it. Thank you for sharing your story. I know it will help other moms who are dealing with this issue. The bling on his helmet is SO CUTE! I am so happy that the helmet helped him and that you (and him) made it through this rough time like champs! Go mom!

  11. 11
    Melanie says:

    This story made me cry. I want you to know that you absolutely did the right thing for your son. I know you had a hard time thinking of the pictures of Disney and the attention it would attract but please feel confident knowing that future pictures will be perfect and no one will look at him strangely when he is older.

    I know this for a fact.

    I have congenital torticollis, I was born with an extra muscle in my neck, a muscle that had left me with the inability to hold my head straight resulting in disfigurement. They didn’t know about it much 40 years ago (heck, we didn’t have to be in carseats!) and the doctors would not remove the muscle until I was three. By then the damage was done. I was crooked for life.

    Your decision was for the best. A few hard months for a lifetime of happiness. You saved him from carrying this burden throughout his entire life. I am still angry that a perfectly curable condition changed the coarse of my entire life.

    You saved your son from being teased in school, being called names like Tilt.
    You saved your son from not been able to wear glasses because one ear is an inch lower than the other.
    You saved your son from complete strangers asking him daily “Did you hurt your neck? Why are you holding your head that way”?
    You saved your son from health problems because one side of his body is smaller than the other (even my hair and nails grow differently on my “bad” side)..
    You saved him from having driving restriction because he can’t turn his head properly.

    Most importantly, you saved your son from being scared to have his picture taken his entire life…at Disney, for his first dance, at graduation, during the birth of his child….every single picture, because his birth defect is so noticeably in pictures.

    He will not have self esteem issues because his mommy, no matter how much it hurt her to do it and see him cry, choose the right path for his life.

  12. 12

    My baby did not have torticollis thank goodness but we did have the ‘flat spot’ or plagiocephaly. We got my little one her heltment in Dallas and I remember driving up there for 3 hours, me and her, every Friday for months…She oly had to wear her’s about 3 months and they said they would like to have done another but the progress she had in those 3 months was amazing. The before and after pictures, her ears were aligned, her forehead was different, her eyes were better…we didn’t notice any of this before the before pictures were taken and everything was pointed out. Insurance was a hassle. I had to write a letter, along with my dr. to get them to pay anything. I do believe they ended up paying a little over half of the helmet but we still drove our 3 hours every week and then every 2 weeks for 3 months…fun times! Most of the time I totally forget she even had a helmet at all but then I see a baby out or I see an old picture and it all comes back! I am glad he progressed so well!

  13. 13
    Janet W. says:

    It’s so difficult seeing your child go through a tough time, no matter what their age is. He looks great now! Good job Momma!

  14. 14
    Stacy K. says:

    I had tears pouring down my cheeks as I read this – it’s like you were telling my story as well. My little Gunnar is in his StarBand now (he’s 10 months old today). I am amazed by the lack of awareness and information readily available to new parents on tort and plagiocephaly. I went through blaming myself and crying for all the same reasons you explained. I’ve changed my mindset recently- in 5 weeks, Gunnar’s head has improved by 5mm, and we have 2mm to go before his helmet graduation can be considered. They just gave us the photos of his casting, and I cried yet again because it brought back all of the emotions from that day. The PT, done correctly, is a huge commitment, and everything we do at home is focused on PT. It has been such a life lesson for me – and I’ve realized that some decisions are so hard, but it’s so worth it for our precious little miracles. Thank you for writing this – I know I’m not alone. Your son’s photos are very reassuring : )

  15. 15

    wow, that is a gripping story. He is a cutie, I hope & pray he is OK now. What an ordeal to get the treatments and a good thing it worked out that you got coverage finally.

  16. 16
    Robin Wilson says:

    Thank you for sharing such a personal, but oh so heartwarming, story! Mom’s instincts led you to question the doctor and that got the ball rolling for a quick diagnosis and treatment. I am not familiar with this condition, but I am so glad that all turned out so well in the end! Personally, I don’t think the helmet looked bad at all! He is a cutie ~ as I am sure is his sister.

  17. 17

    My son just turned 3 months and has been diagnosed with Torticollis and plageochephaly.
    I brought it to my dr attention at his 8 week old appoint. Dr said its mild however PT said its not…so tomorrow he gets assessed for a helmet and I’m scared for him and me…will they take an ultrasound of his neck to find out what kind he has..dr never said which kind.
    It’s comforting to know that I’m not alone in this

  18. 18

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  19. 19
    Theresa Patenaude says:

    Hi, I was wondering if I could get your permission to use the picture of your son’s pressure spot in a pediatric pressure ulcer prevention pamphlet I am working to revise? It is prefect example of the stage of ulcer we want to make sure parents recognize and talk to their care provider about. Most of the pictures of pressure wounds I can find are of adults, and also at much later stages.

    I love your story, and your image could help a lot of parents to seek help before it gets worse.

  20. 20

    i m also suffering from tortocollis wat should i do?

  21. 21

    Hi Melanie,

    I’m going through the same thing with my nine-month-old daughter, Emma. We noticed her head tilt at two months, then four, then six, but our pediatrician kept brushing it off, saying it would correct itself. Finally, I pushed the issue again and was referred to an orthopedist, who confirmed her tort. We’ve been in PT since she was 7 months. The PT kept saying we should consider a helmet, but all of the pediatricians (including the new one we are now seeing) and the orthopedist said the issue would correct itself. Still, she’s definitely got positional plagiocephaly, and it’s not getting any better. We just saw a neurosurgeon yesterday who recommended her for a cranial helmet.

    I have been crying my eyes out ever since (and we haven’t even gone to the actual consultation yet). In Googling around for other moms who have been in this same spot, I came across your story and cried some more. Thank you for sharing this. You are so right in saying that “[the] helmet is a symbol for me of an important lesson I’ve learned as a mom; we have to put aside our own fears, emotions and insecurities to do what’s truly best for the precious, tiny people we love.” I am so sad that I may have to put this on Emma, but I want the best for her, and if I can help her now, she deserves that help. Thank you again for sharing your story. Your Brandon is so handsome!

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