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Our Journey with Plagiocephaly

The other day we had our daughter at our local library for story time.  Some of us stay and chit chat and let our little ones play afterwards.  One of the moms has a son a couple months younger than our daughter who is just starting to walk.  She asked me if our daughter ever walked on her tip toes because he was starting to and was concerned. I, being the honest person that I am, said no but I did know someone who did.  She asked if it was a problem and I told her yes it could be, while the other mom and librarian tried to play it off that some kids just do that.  It really frustrates me how people are so scared to be honest with someone, especially when it will end up doing more bad than good.  If you are concerned about something, then it is a problem and genuine concern. Period!

So what’s the point of this little story?  Well I had the same problem when my daughter was born and I was telling everyone she had an issue with her neck and not being able to turn it and the flat spot she had gotten because of it.  Everyone, including the doctor, family, & friends, would just say “oh it’s normal. Babies just favor a side and her head will round out.”  So here’s our story about plagiocephaly, physical therapy, and a helmet for our little one.

When your baby first arrives you have so much going on you really are just trying to survive with the lack of sleep, so I didn’t notice anything major at first.  By her 1 week appointment I had realized that she was really favoring her left side, so I brought it up to the doctor.  She brushed it off that she was just favoring it and that is common with babies.  Three weeks later, at her 1 month appointment, I again brought up that she was favoring the left side of her head.  To that, the doctor again said she was just favoring it and to change her position in her bassinet and put toys on the right side she was not looking to.  I should have at that point gone to see another doctor, but live and learn. 

By 5-6 weeks my daughter’s head had some pretty drastic flattening on the left side of her head.  Nobody would agree with me and everyone told me it happens that it will round out as she grows because it’s not that bad.  At this point I got really upset and started blaming myself that it was my fault.  I know so many people who left their babies in bouncers, swings, car seats, and in their crib all the time that had no issues.  I exclusively breastfed my daughter, so she literally was ALWAYS in my arms.  I said I would never co-sleep, but that changed with breastfeeding. Most nights my daughter was in our bed lying on her side.  I carried her around the house in a carrier to keep her close and get her to sleep.   So no, I did not leave her sitting somewhere all the time.  Looking back, I know it was not my fault, but you can’t help but think you could have done something to prevent it.

Now it was time for her 2 month check up.  The doctor didn’t even say anything about my daughter’s head shape or inability to turn her head!! I had to bring it up to her, and I got the exact same response that I got at her 1 month appointment.  I know what you’re saying, “why didn’t I see another doctor immediately?”.  See I have had my own issues with doctors and misdiagnosing me, so I always ended up doing my own research and figuring it out.  So that’s exactly what I did.  I know, I know, you shouldn’t look for health information on the web, but you really can find the truth out there and a lot of helpful information.  I started looking into flat head syndrome.  There are 3 kinds, plagiocephaly, brachycephaly, & scaphocephaly.  My daughter had plagiocephaly, which is the flattening on a side of the head.  I looked at the causes of it, besides the obvious of being put in a device to not move around.  Up popped a lot of information about torticollis.  According to WebMD, torticollis is:

“Congenital torticollis occurs when the neck muscle that runs up and toward the back of your baby’s neck (sternocleidomastoid muscle) is shortened. This brings your baby’s head down and to one side. This is known as congenital muscular torticollis.

Experts don’t know exactly what causes the shortened neck muscle. The muscle may get injured before or during the baby’s birth. The injured muscle may bleed and swell. And scar tissue may replace some of the muscle, making it shorter.”

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Looking back at pictures, I realized in all of the pictures my daughter was looking to the left and had a slight tilt to her head like the above picture.  So I knew this had to be what it was.  I started doing a lot of research on it and found an awesome support group and a company called Cranial Technologies that does the helmeting to correct head shape.  I found diagrams and instructions for stretches to do with her and I started them right away.  And still nobody (family or friend) wanted to say that she had anything wrong with her head or neck!!

She started to slowly be able to turn her head a little to the right with the stretches.  We went to her 4 month appointment with a different doctor and now love this doctor nurse practitioner.  She talked to us about our concerns and was completely honest that the flattening may or may not correct itself, but we needed to have her evaluated by a pediatric physical therapist.  She also wrote us a prescription for a helmet in case we decided to go that route.   I got into the physical therapist in a week and a half to get an evaluation.  What do you know, I was right!  My daughter had torticollis and the physical therapist said it appeared to be from birth based on the range of motion and mobility of her neck.  I was so glad that I had started doing stretches with her, otherwise the torticollis may have gotten even worse.

That same week, we had an appointment at Cranial Technologies for an evaluation.  They have this awesome DSi machine that takes numerous HD pictures of the head at one time.  It replaced the way they used to do it by making a plaster cast of the head.  We got to see what the head looked like and the measurements.  They diagnosed her with a moderate case of plagiocephaly and recommended a helmet for her.  At this point, I was just a hot mess and in tears even though I knew that was what they would tell me.  My husband told me he didn’t think I could come to the appointments by myself for the following months.  I was fine after that but even though you know there’s a problem, it always sucks to hear it from someone else.  I would rather that then people sugar coat things and have regretted not getting a helmet for her.  They are a business, so we went into it knowing this, but they will only recommend a helmet if the measurements are over a certain number.  I knew this because there were people in the support group I had joined that said Cranial Technologies told them not to helmet their child.   The other important thing about using a helmet to correct head shape is that they will only do it up to 2 years old.  The longer  you wait, the longer it takes to correct the shape of the head because head growth slows after 6 months.  So at 4 months our daughter was in physical therapy and at 5 months she was in a helmet.

Just like anything else, your results depend on what you put into it.  We had to take our daughter to physical therapy 1x a week and I had to do a series of stretches 3x a day, every day.  We also had to take a 1.5 to 2 hour drive (depending on which location we went to) every week to get her helmet adjusted.  So this was a big commitment, but I was determined to do what I needed to do.  It was amazing to see how each week she gained more and more movement in her neck and how her head was beginning to fill out where it needed to.  It’s also important to note that the helmet does not reshape the head.  It is simply a holding device, as the head became miss-shaped from an external force, so the part that is flat will fill in as the rounded part that protrudes does not continue to grow. 

Cranial Technologies is very concerned about the fit of the helmet to ensure there is not any break down of the skin which can cause an infection.  After the appointment to scan for measurements, we went back the following week to get the helmet fitted.  Lucky for us, our daughter really was not bothered with wearing the helmet and did not fuss about it.  After fitting it and making adjustments where needed, we had to return 3 hours later to check on the skin to ensure the helmet was not rubbing.  We went to grab lunch while we waited and I almost lost it again.  We’re sitting there eating and woman comes in with some children.  Her youngest daughter, who was probably 5, sees Alyssa and says “Mommy, look at that baby’s head.”  Yep, here comes the tears, but wait; she finished the sentence with “she’s so cute”.  Breakdown diverted.  That really is another tough part about it.  Everyone looks, but nobody wants to ask about it.  They assume you just left your baby to lie around and never held her.  Little do they know how much she was held, I mean she napped on me for goodness sake.  If we really didn’t care we would never have gotten the helmet.  See, most insurance companies or employer’s benefits deny coverage of a custom orthotic stating it’s a cosmetic need not a medical need.  So yes, we dished out quite a bit of money for the helmet without thinking about it because we wanted to make sure we did what was right.  And she was the freaking cutest thing ever in the helmet!

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The physical therapy went really well.  The therapist was surprised with how well she progressed, but I’m pretty sure that was because I actually did all of the stretches every day.  I’m sure she gets people who just can do the stretches and listen to the baby cry because they can’t distract them long enough.  After 3 months of therapy, we got the clear to stop going to appointments.  I still had to do the stretches about 1x a day for the following 3 months to ensure she kept her full range of motion in her neck.  

Alyssa also only had to wear the helmet for 9 weeks.  It seemed like forever when she was wearing it, but it really wasn’t long.  She built up over a week to wearing the helmet for 23 hours each day.  Once up to the 23 hours, she got 1 hour out of it to get bathed and clean the helmet.  Woo those things get a little stinky.  After the 9 weeks, she had what they call an exit appointment.  They retook the images and showed us the comparison of her head shape.  Her head’s not perfectly round, but who’s is?

It’s crazy all the things that you may have to handle with a baby.  Before all of this I never knew what torticollis or plagiocephaly is.  When I talk to people about it now, I just forget that it’s not common terms and have to explain it.  The physical therapy was a must, but was the helmet?  Who knows because everyone says it rounds out.  I can tell you though, I can pick out a child with a miss-shaped head now.  Even through the hair.  So to me, it seems more like it doesn’t round out, it just becomes less noticeable. 

There are a lot of concerns with a baby, but the long term effects of head shape are still unknown because there have not been enough cases to study.  According to the Cranial Technologies Website:

Due to many factors, the incidence of plagiocephaly has dramatically increased in the last 20 years. While the numbers vary depending on the research study, the most commonly cited incidence is one out of 30 infants. It should be noted that many recent reports published in 2008 and 2009 have cited this number at 1 in 15 and most recently 1 in 6.

That’s a huge number and I’ve definitely seen it.  While there is luckily no proof of any development issues to the brain, there is still the possibility of other effects due to the head shape.  I encourage you to check out the Cranial Technologies website as they are involved in a lot of research on plagiocephaly.  I also ask that you take a moment to sign the Plagio Petition to have the American Academy of Pediatric set a guideline for pediatricians to evaluate a babies head at every well visit. You can sign the petition here!

Enjoy Your Adventure,
Samantha

 

FTC Disclosure:  This is a recount of our experience with our daughter.  All opinions expressed are my own.  This is not medical advice and I recommend contacting your medical provider with questions.

One Comment

  • Lisa Ralston
    Posted July 30, 2013 at 7:17 pm | Permalink

    I just LOVE you! You are such a great mommy.. Alyssa is a very blessed little girl to have you…Great job on the story….:)

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