My Helmet Baby (Squared)

Our family's journey with plagiocephaly

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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Helmet Decorations… Plus, Plagiocephaly on The Doctors

I have to share pictures of Emily in her newly decorated helmet.  I posted a picture of the front on my last blog entry, but the back is even more awesome.

This was the first weekend that Emily had her helmet, and she got some GOOD attention, I am happy to say.  (Much better than the first comment I got about Samantha’s helmet – “Is it something you did?”)  Two random people actually asked how she was doing and complimented her decorations.  One women said “that might be the coolest helmet I’ve ever seen!”  She said that her daughter had a flat head in the back, but it was perfectly symmetric, so they didn’t get a helmet.  She said it is still flat, but her hair covers it.  Not sure what we would have done had my girls’ heads been symmetric.  The other woman not only asked how Emily was doing, but also asked how I was doing with it!!  It was very sweet of her.  Apparently, her coworker’s daughter had had a helmet and had been very distraught, until her baby ended up doing just fine!

My other topic of conversation:

It was brought to my attention that the show The Doctors had a segment on infant flat head.  Here is the segment.  (I think it is an older segment, but I can’t typically watch daytime TV, so I didn’t know about it until it replayed on Friday.)

The Doctors – Flat Head Babies

I usually have a lot of respect for the doctors on this show, but I feel like they took too casual of an approach to this topic.  First off, the mom who was featured had a baby who was 8 months old.  This issue doesn’t start at 8 months old.  It starts when babies are younger than 6 months old, often when they are newborns.  In some infants, it isn’t as easy as just having your baby face the other direction when they are laying down.  If your baby consistently turns their head to one side, even if you try to turn it the other way, he/she may have torticollis, a shortening of the muscles in the neck.  This may not go away without exercises and stretching, and once a child spends too much time on one side of their head, the head can start to flatten.  Torticollis was not mentioned at all in the segment.

I think it good that they mentioned that tummy time is important, as well as not allowing babies to spend too much time in reclined seats (car seats, swings, bouncy seats) but, sometimes, that is not enough.  In addition, an 8-month-old baby is already moving around in most cases, so repositioning (i.e. turning their heads) is not necessary anymore.  However, at 8 months old, if your child has a misshapen head, it may not completely round out without some help.  The ideal time to get a helmet is around 6 months old, because babies have growth spurts between 6 & 12 months of age.  During these growth spurts, if a baby is wearing a helmet, the head’s growth will be redirected into the spaces in the helmet to “fill it in”.  The inside of the helmet is shaped so that there is room for the baby’s head to round out.  If your baby’s head is misshapen, and you wait to get a helmet until after 12 months, you may not get much correction from a helmet, and your child may just have to live with a flat or asymmetric head for the rest of his/her life.  The Doctors made it sound like moms and dads who get helmets for their children are just impatient.  I don’t really think that is a fair statement, knowing what my children’s heads looked like at different points in time.   If we hadn’t put a helmet on Samantha’s head, I believe her head would have been asymmetric for her whole life.

Prior to getting helmets, a parent can try to determine if their child’s head will round out by aggressive repositioning.  If there is some correction, a parent could choose to forego a helmet.  With Samantha, we did aggressive repositioning (kept her off of her head ALL the time) for 2 months prior to getting a helmet (from 4-6 months old).  We saw some improvement, but not enough to be confident that her head would round out.  When she got the helmet, her assymetry was 16 mm, which means that one diagonal of her head was 1.6 cm longer than the other diagonal.  Emily’s head assymetry was only about 1/2 cm at her most recent measurement (9mm at her first measurement), but I started repositioning her and doing exercises as early as 1 month old.  I think Emily’s head could have rounded out eventually since we started repositioning so early, but I really did not want to take the chance after Samantha’s experience.  The Doctors were misinformed when they said that a child’s head would correct with a helmet in 12 months.  Some helmets are only worn for a few months.  STARbands are typically worn from 4-6 months.  I think that loosely saying 12 months could make the process even more scary for a parent!

I think it was good that The Doctors covered this topic and mentioned that they believe prevention of SIDS is more important than your child’s head shape.  I just wish that they would not have taken such a casual approach and had been more educated on the topic.  I think that pediatricians should be talking to new parents within the first month after birth to encourage them to watch for a tendency to turn to one side and flattening of the head.  It may not make a perfect head, but maybe it wouldn’t be as severe otherwise.  Many parents who have gone through this believe that they were not as informed as they should have been at the beginning.

Comments, anyone?

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Super Cute Party Idea

I wanted to send a shout-out to this mom, who had a helmet-decorating party for her baby, to educate family and friends on plagiocephaly and helmets.

http://blog.hwtm.com/2012/03/tortilly-adorable-turtle-party-awareness-for-plagiocephaly-torticollis/#comment-127845

She echoes so many of the same feelings I have had during this journey, especially about being thankful that this is something that can be corrected and that we have healthy, happy babies otherwise.  When we picked up Emily’s helmet on Wednesday at the orthotics & prothetics office, there was a young boy, maybe 5-7 years old in the office who was on crutches.  I’m not sure what type of condition he had, but I’m sure his life had not been easy to this point.  He was the MOST wonderful, upbeat little boy though and insisted to him mom “I’ll open the door, Mommy!” when she tried to help him.  I’m sure that his mom wishes that a helmet would just fix everything.

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Happy St. Patty’s Day!

It is green day at school today for Emily and Samantha!  Luckily, Emily’s helmet will protect her from any drunken shenanigans…

Here’s a picture of Samantha on St. Patty’s Day when she had her helmet.  This was actually one of her final days wearing it!

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We officially have a Helmet Baby #2

We picked up Emily’s helmet yesterday from the orthotics company that we will be working with.  Our visit lasted about 50 minutes.  Amanda brought the helmet out to us, and it was just so cute and little!  She put it on Emily’s head, made some markings on it and then took it into the back to make some adjustments to it (by melting and maybe cutting the plastic?)  Then I tried to put it on and take it off of Emily myself.  It is amazing how quickly THAT came back to me, although I still could use some practice.  Emily wore it for about 15 minutes in the office and then we checked for red marks, but there were none that did not go away right away.  She ended up wearing it for the drive home, during which she fell asleep.  There is a schedule to build up to full time wear of the helmet, where the babies wear it for 1 hour on, 1 hour off the first day, 2 hours on, 1 hour off the second day, 4 hours on, 1 hour off (including naps) the third day plus nighttime wear, 8 hours on, 1 hour off the fourth day, and then 23 hours on the fifth day.  Today was Emily’s second day, but we were not perfect with the schedule due to different factors, but she really did not mind it at all most of the day.  She is still getting used to me putting it on and taking it off, and I think it was a little tiring for her sometimes, but she really did great overall.

Here is a picture of Emily in her carseat wearing her helmet home yesterday.

Last night, I decorated her helmet with some stickers from BlingYourBand.com.  It turned out really cute.  I took pictures of the helmet but need to upload them, and I want to get some pictures of Emily in it as well.  I actually have pictures of Samantha in her helmet on St. Patty’s Day 2010, so I’m going to post pics of both of them tomorrow.

Emily had her second physical therapy session today as well.  After her first session two weeks ago, we had to work on her head lag (her head lagging when she goes from laying to sitting), sitting by herself, and pivoting when doing tummy time (spinning on her belly.)  We worked on these skills since then, and Emily met all of her goals.  Our physical therapist Mary was impressed!  She recommended that we put Emily in the corner of a laundry basket to play with her toys.  The laundry basket will support her if she starts to fall since is it more confined, it keeps her toys within reach, and it is portable and safe.  In addition, it will help her correct her posture herself (catch herself) when she starts to fall.  We are also going to work on having her play with toys on her right side when she is in a sitting position, supporting herself with her right arm.  She does this well on her left side, but needs to work on supporting herself on the right.  Her next physical therapy session will be in 2 more weeks.

Stay tuned for more pictures!

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Helmet Baby #1’s Experience

In the wake of receiving our 2nd helmet in 3 years on Wednesday, I thought I’d share pictures of our helmet experience with Samantha 2 years ago.  Samantha got her helmet when she was 6 months, 1 week old and wore it until her first birthday (only at night the last 3 weeks.)

Here is a picture of Samantha on her first day in her helmet:

This picture is after we decorated the helmet.  I highly recommend decorating the helmet and putting the baby’s name on it.  The reactions that we got in public to the helmet changed dramatically after her name was on it.  Most people said “hi Samantha!” instead of “why is your baby wearing a helmet?”

Here are a few pictures of Samantha’s head before, during and after her helmet experience.  You can see that there was a pretty dramatic change in her head shape over time.  We were very happy with the correction from the helmet. (You can click on these pictures and they’ll open bigger.)

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