My Helmet Baby (Squared)

Our family's journey with plagiocephaly

Lawsuit about Plagiocephaly

Wow.  This makes me thrilled that my pediatricians were on top of this issue.  I guess this should serve as a warning to others who aren’t…

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Emily has officially graduated from her helmet.  Here is the proof!

Her Oblique Diagonal Difference went down to 1mm (i.e. one diagonal was only 1mm different from the other diagonal) and her Cephalic Ratio went down to 88% from 91%.  I didn’t even realize that she had a touch of bracycephaly, but honestly, I did wonder since her head seemed a little wider than I might have expected.  I think it is amazing that one diagonal of her head grew almost 1 cm while the other diagonal only grew 3 mm.  Below, I’ve shown diagram from her initial and final scan which superimposes a drawing of Emily’s head before the helmet and a drawing from after the helmet (yesterday.)

You can see in the drawing that the left side of her forehead grew more than the right side, and that the right back side of her head grew more than the left back side of her head.  With a 1mm Oblique Difference, her head is probably rounder than ours now!  I really wish we had gone for a final scan for Samantha’s head too, but after 6 months in the helmet, I wasn’t about to make ANOTHER appointment for her just to get the scan done.  It certainly would have been awesome to see though.  I’m sure we would have seen a much more dramatic difference in the 2 head drawings for Samantha.

Here are some pictures of Emily in her helmet during her last days in the helmet, and then our ceremonious removal last Friday.

Here are some pictures of Emily’s head afterward.  It looks great!

I am so excited that we are done with this whole process, but at the same time, I’m so glad we did it.  To all the parents out there (and other family members) who are contemplating doing this, it is only a few months in the whole scheme of things, and if you have the means, do it to help your child if their head is moderate to severe.  You can wait it out to see what happens, but I’ve talked to other people and have seen posts from people on different message boards from parents who WISH they had acted on it sooner, and then it was too late.  If you think that your child has a head shape issue, make sure that your pediatrician takes it seriously at a young age.  It is like braces – it is not something that is detrimental for your child to live, but if you have the means to make it better, you would do it.  However, unlike braces, you can’t fix this later.

To new parents (pass this along!!):

1. Do lots of tummy time, even if your baby hates it.  Around 3-4 months, when the baby has more neck control, use Bumbo seats (or similar) to keep them off their head sometimes.  Another option to keep them off their heads is wearing them in a front or back carrier, or a sling if their head is positioned differently each time.

2. If you notice your child’s head turning to one side all the time, speak to your pedicatrician about neck and head stretches.  Put toys and mobiles on the opposite side.

3. If your child’s head has started to develop a flat spot on one side, it doesn’t look “round”, it appears to be shorter in length then width, or you are worried about these types of things occurring because they always look to one side, you should research repositioning methods and try to use reclined seating less (bouncy seats, car seats, swings.)  See #1 and #2.  We also had our daughter side sleeping at a young age, being propped up off the flat spot with a rolled receiving blanket.

4. If the flat spot isn’t rounding out on its own by 4-5 months of age, talk to your pediatrician about getting a referral to a specialist or a cranial remolding facility.  If they blow you off, INSIST that you see a specialist.  Your child may still need physical therapy if they turn their head to one side a lot or have a head tilt (see torticollis video here), so you may need a referral for that too (from your pediatrician or a specialist.)  Don’t wait because then you may miss a window of opportunity to correct your child’s head shape.  It is better to do this when they are younger.

5. If your child needs a helmet, it isn’t the end of the world.  They won’t remember it except from you telling them or from pictures.  It probably won’t bother them as much as you think it will.  You will miss your child’s head, but you also learn to really savor the moments when he/she doesn’t have it on.  Your baby may get a lot of attention with a helmet on, and most of it will be good.  You will become a stronger, more aware parent during the process (and if you research like me, you will probably think you are an expert!  ha ha)  And when it is over, it is a great feeling to know you did this for your baby.

Thanks for reading!!


Last Day in Helmet!

Tomorrow is Emily’s last day in her helmet.  When we take it off to clean it tomorrow night, we ARE NOT PUTTING IT BACK ON!!  Woo hoo!  Emily’s final scan and appointment at our Children’s Hospital will be next Wednesday.  Hopefully I can get some before and after pictures from the scan to post here.  Otherwise, I will try to create some myself.  Her head looks really great.  I am happy we decided to do the helmet, because I think I would have always wondered if it would have looked “better” if I hadn’t done it.  I didn’t want to regret not doing it.  It isn’t the easiest thing to go through, but as I thought when we did this with Samantha, there are far more difficult things we COULD have gone through.

Emily will be 10 months old in 2 days.  She started crawling a few weeks ago, and this week, she has started to pick up speed!  We are still seeing her physical therapist, who is encouraging Emily to pull herself up and even climb the stairs, but Emily has only pulled up a handful of times.  She really loves to explore now that she can move around herself!  Her newfound independence is SO cute!

Stay tuned for pictures from Emily’s last day!

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2+ Months in Helmet…One Month to Go!

We had a helmet appointment yesterday, after Emily has been in her helmet a little more than 2 months.  Since her head measurements look good, there isn’t much room left to grow, she is meeting milestones and she doesn’t spend much time lying on her head, she is going to be done wearing it in a month!  We have our next (and final!) helmet appointment scheduled for June 27, which will be our final scan at the orthotics office and a follow-up at Children’s Hospital.  If she hadn’t had any room to grow in the helmet yesterday, I think she would have already been done, but since there was a little room, we will have it for another month.  We don’t expect to see a whole lot of change in the next month, but I suppose you never know.  Her head isn’t perfect, but no one’s head is perfect!  I am just thrilled that Emily won’t have to wear the helmet during the hottest part of the summer, and that of course, we will get to see her head full time again soon!

Emily was 9 months old on Wednesday, May 23.  She is making a lot of progress physically and is moving around a lot!  She isn’t crawling for real yet, but she uses her arms and legs to push her forward to get where she needs to be.  I wouldn’t call it an army crawl, but something similar.  Her physical therapist is very determined to get her to crawl properly, so we are working on getting her into the hands and knees position (and she does like to bounce in that position now.)  She is one determined little bugger though!  When she sees something she wants, she will get to it!  I think we are going to have to really start paying attention to our baby proofing since we’ve become lax with Samantha being older now.  Most of our “proofing” still exists, but we just don’t always use it (i.e. cabinet locks aren’t attached, gates are left open, etc.)  And now that Samantha will leave things like barrettes or fake coins lying around, we are going to need to make sure those are out of Emily’s reach.

I recently learned about an orthotics company in the Carolinas and Georgia who created a nice educational and informational web site explaining head shape issues and treatment options.  I thought the “causes of head shape abnormalities” section was done well, as were a few other sections.  Check it out:

Level Four Orthotics and Prosthetics

I have also shared a few recent pictures of Emily (and Samantha.)  The last few pictures are actually of Emily without her helmet and you can see that her head looks really good.  We were recently on vacation in the Outer Banks and the girls had a blast!  I was worried that it would be hard to manage the helmet with the heat and everything, but I guess I was forgetting that Emily still takes 2 naps a day and that she wouldn’t be in the sun much anyhow!  There were only 2 days where she had the helmet off for an extended amount of time (more than 1 hour).  Our orthotist told us that she was most concerned about the helmet being left in the heat (they can melt!) and about sunscreen getting under the helmet and irritating her head.  I guess these things could really happen any time, so we will have to remember a hat and sunscreen any time she is outside, but with a 9-month-old, we would really have to do that anyhow.


Plagiocephaly Infographics

Those are 2 really big words!  I am such a geek that I love this stuff.  Check this out.

Plagiocephaly Infographics

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Torticollis Information… To Pass Along to New Moms

There is a Plagiocephaly Support Group in the Community that I have visited throughout our experiences with our babies’ helmets.  Most people go into that group seeking support from other parents who have gone through similar experiences, and the group really provides the support in a multitude of ways.  The group owner posted some information recently that could be really helpful to a new mom.  Pass this along, and I’ll link to the post at the bottom so that she gets credit for it!

What is torticollis? In newborns, we are generally referring to congenital muscular torticollis, which is a shortening of the sternocleidomastoid muscle in the side of the neck. The SCM attaches to the clavicle at one end and the skull base on the side of the head at the other end on each side of the neck. The SCM is responsible for turning our heads and being able to hold our heads straight. When the SCM is damaged or its growth is impaired, it causes CMT (hereinafter torticollis). Torticollis is most frequently seen in infants who were in a breech position, who “dropped” early, other causes of in utero constriction, or those who had a difficult delivery requiring vacuums or forceps.

What are the warning signs of torticollis? Although the hallmark symptom of torticollis is a head tilt due to the shortened SCM on one side of the neck, this tilt is NOT always apparent or severe – especially in newborns who have little neck control. Experienced mothers may notice something is wrong very soon after their newborn’s birth when they attempt to breastfeed: babies with torticollis often cannot turn their head in both directions with an equal range of motion, making it difficult to nurse on oneside but not the other. That being said, here are some of the early warning signs of torticollis:

  • A strong preference to look in one direction is often one of the most telling signs that torticollis may be present. Many parents report that their baby is able to turn his or her head past one shoulder “like an owl” (which is normal) but not the other. Newborns with torticollis will almost always only sleep on one side of their head no matter what direction they are placed in the crib. Babies with tort will stare at a blank wall as opposed to turning their heads to look out into the room simply because they cannot turn their head in the opposite direction.
  • Tort babies usually hate tummy time. Tummy time takes some getting used to for all babies, but if an infant refuses to lift his or her head, seems unable to lift his or her head, or tries but then immediately lays down on the same side of his or her face each time, tort may be present.
  • A head tilt. If a baby consistently keeps his or her ear toward one shoulder and his or her chin pointed toward the opposite shoulder, this is most likely torticollis. The tilt does not need to be severe – in fact, for the first few months of life, it can be easy to miss because the baby is not having to fight gravity to keep his or head up. When sitting in a bouncer or swing, however, parents may notice a tilt.
  • A flat spot on the baby’s head. Unfortunately, many babies with torticollis are either born with or develop plagiocephaly (a flattening of the back side of the head) as a result of their torticollis. Since in utero constraint is one of the most common reasons torticollis develops, many infants concurrently develop plagiocephaly in the womb due to the same constraining factors. Other infants without noticeable plagiocephaly at birth will develop plagiocephaly as a result of their inability to turn their heads in both directions. Rapid brain growth during the first few months of life and the amount of time a newborn spends sleeping can make a flat spot appear quite suddenly, and any infant that develops plagiocephaly should be evaluated for torticollis. As many as 85% of infants that develop plagiocephaly also have torticollis.

So how is torticollis treated? Torticollis is treated with physical therapy. A pediatric physical therapist will teach the parents a series of stretches (also seen here) that lengthen the affected SCM. As the baby progresses, exercises are added to the daily at-home regimen to strengthen the weaker side of the neck. Occasionally, physical therapists will recommend TOT collars or physio tape for persistent tilts. Physical therapy is extremely effective, and very few infants will need surgical intervention to correct their torticollis. Torticollis that does not respond to physical therapy may not be muscular in nature (there are several other causes of torticollis, including ocular tort, bony abnormalities, and benign paroxysmal torticollis).

And what are those helmets for anyway? Cranial bands are used to treat the plagiocephaly that often occurs with torticollis (or can occur on its own without torticollis). Active bands apply a mild pressure to prominent areas of the head and gently encourage growth to the flattened areas, while passive bands provide a symmetric shape to mold the skull as the infant grows. Aggressive repositioning can be equally effective if it is initiated prior to four months of age.

If you are a parent of a child who is looking for more information and a supportive group of parents to “talk” to, this Plagiocephaly Support Group is really great!


Controversial article about plagiocephaly

This article is one reason it is difficult for parents to go through this experience.  Thanks for making us all feel worse!

As I’ve mentioned in my previous blogs, I did a lot to keep my children off their heads and I carried both of them a lot.  However, once the condition starts, it is difficult to keep it from progressing.  I used my bouncy seat more with Samantha than with Emily, but in no way did I use it for hours on end.  Our baby swing was barely used by either child.  I often carried my children in my left arm so that I could use my right arm to do things, and sometimes I wonder if that contributed to their head flattening.  I don’t think someone could call me lazy for carrying my children around while I did other things.

I really wish more articles would discuss torticollis and its contribution to plagiocephaly.  Emily was diagnosed with it months after I had already recognized the issue and had done tons of tummy time and stretching.  Samantha had been turning her head only to the right for a long time before we ever did any serious exercises (other than stretching), and now, I believe she should have had physical therapy.  Luckily, as far as I know, she didn’t have any long-term effects from it.  After watching a physical therapist work with Emily, there is NO WAY that a non-physical-therapist parent would know to do certain exercises and recognize certain behaviors.  I think that Emily is pretty strong, but at the same time, I do still see that head tilt when she is tired in her car seat (with her helmet on.)


Almost 4 Weeks in the Helmet

Emily is about 7 1/2 months old and will have been in her helmet four weeks on Wednesday, and I am very pleased with the way her head is looking.  From the top, there is probably minimal asymmetry.  Her head is looking nice and round.  There are still some bumps and flat spots on the bottom right side of her head, but hopefully that will get better over time too.

In physical therapy, Emily is doing great.  We are working on getting her into a crawling position at this point, and when I try to prompt her to do it by tugging under her shoulders a little bit, she giggles because it tickles her underarms.  She is pivoting and rolling all over the ground and sits up really well on her own.  She is also starting to reach more and right herself after reaching for something. She also loves to jump, either with us holding her or in a jumparoo, and we are helping her stand a little while leaning on something.

Here are some pictures of the girls from Easter.


A Slight Setback

This week, Emily had a slight setback, but nothing major.  On the back left side of her head, where her head is not flat but is rubbing up against the helmet, she had a bit of a bump and redness from irritation.  I took her to see Amanda and she made a little space for that spot in the helmet by melting it, so that her head was not rubbing anymore.  I was concerned that it would end up being a small bump on Emily’s head permanently since her head could grow into that space, but she said that little bumps like that should smooth out over time.

When we first got the helmet, I had rounded up some baby shampoos that I didn’t typically use and put them in stations throughout the house, so that we could just wash Emily’s helmet and/or head wherever we were each night.  It may have been a bad idea to use different baby shampoos on her head and helmet that she wasn’t used to, so I switched back to the Aveeno Baby Moisturizing Body Wash and Shampoo that I had been using on Emily before all of this.  I don’t know if that was the problem, but hopefully, the consistency will help and the bump will go away.  It has already become less red.

Here are a few pictures of Emily from last Friday that I just have to share.  It was such a pretty day outside!  As you can see, Emily was not exactly thrilled with the feel of the grass.  This is really one of the first times that she ever felt the grass!

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One Week Follow-Up

On Wednesday, Emily had her one week follow-up appointment after getting her helmet.  I was not expecting much, but amazingly, she already had all-around head growth and some correction since she was last measured (when they scanned her on February 28.)  I noticed that Emily seemed a little chubbier (he he), but I did not notice much change in her head, so I am thrilled!  Amanda drilled 3 holes in the back of the helmet to help with her sweating in it, but that was the only adjustment that she needed to make.

Emily has adjusted to the helmet very well.  It seemed like she did not sleep quite as well the first 2 nights that she wore it, but since then, she seems to be back to normal.  I gave her little head a massage last night and this morning, and she seemed to just love it.  I remember Samantha would itch her head like crazy when we took her helmet off, but Emily hasn’t been doing that.  Every time we take the helmet off, she does this little shiver, which is hilarious.  I am glad to see that she has adjusted well.  I have set a goal to have her helmet off in 3 months.  Maybe that is a ridiculous goal, and I know that I can’t really control it, but I can hope, right??

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