Torticollis: The Baby in the Little Blue Helmet

“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.

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 1^st 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.

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.

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.

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.

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 3^rd 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.

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.  Her hobbies are healthy cooking, fitness and spending time with her family.