My Helmet Baby (Squared)

Our family's journey with plagiocephaly

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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STARlight, Star Bright…

Today, I took Emily to get re-scanned so that her helmet can be made.  She stayed still for the whopping 1.5 seconds of the scan, although she cried the whole time!  The orthotist that met with us, Amanda, actually has experience using the STARlight helmet, which looks like this.  She recommended this type of helmet over a STARband because it is easier to clean and is less smelly, and she said that there was no evidence to suggest that one works better than the other.  She said that parents who have had both really like the STARlight.  (Apparently we aren’t the only family in the world who has had 2 kids in helmets.)  Soooooooo, we decided to go that route.  I’m not sure how I would have felt if Emily’s head had been more asymmetric than it is, but I figured that since it was mild-moderate, it was worth a shot, especially since she’ll be in her helmet over the summer.

The most exciting part of our visit though was finding out that Emily’s head asymmetry has gotten even better.  Her last scan on 2/14 revealed that her asymmetry was 7mm, but this scan showed only a difference of 5.4mm!  I asked if there was a possibility that she would wear it for a shorter time period, and Amanda said that it would depend on how much correction we got (obviously), if she was meeting her milestones, and if her torticollis was completely corrected.  Thus, the physical therapy and exercises were going to be very important to this process if Emily is going to get out of her helmet sooner than expected.  I don’t want to get my hopes up, but it is great news nonetheless.

Emily will be getting her helmet on March 14… so stay tuned!

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Next Steps…

We found out yesterday that my health insurance company authorized Emily’s helmet, so she will be re-scanned next week and should have her helmet within 2 weeks after that.  We are lucky that our insurance approved the helmet, but being that I have a high deductible, we will have to pay most of it out of pocket anyhow.  Helmets are very expensive, but the cost of the helmet includes all of the fitting appointments throughout the duration of the time the child wears it.  I would have thought that since this (wearing helmets, not plagiocephaly) has become more common, the cost of the helmets might go down, but I guess not.  Demand is just higher now, but at least that means that the orthotists are more experienced with it.

Emily is going to be wearing a STARband, one of a few different kinds of helmets that are commonly used for this purpose.  The helmets are plastic on the outside and sort of a styrofoam on the inside.  They are pretty lightweight and don’t really bother the babies much at all after they’ve worn them for a few days, if the fit is correct.  The styrofoam is very thick when they first get the helmet, and as the baby’s head grows, an orthotist shaves foam out of the helmet on the part that needs to be “rounded out” and the baby’s head will grow into that spot.  The head will basically take the shape of the helmet, so you want an experienced orthotist to be doing the fittings.  The helmet should not impact hair growth, except maybe at a point of contact.  Some kids have a lot of hair in the helmets, but I just happen to have balder babies, which is a little easier for cleaning!  Once we get the helmet, we will have to expect to clean it once or twice a day and also wipe off or wash the baby’s head.  Samantha had her helmet in the winter, so although the smell was sometimes bad, I don’t expect that it will be quite as bad as Emily’s might be through the summer.  The babies wear their helmets 23 hours a day, with one hour off to clean and air out the helmet.

Orthomerica (maker of the STARband) has a STARscanner that they use to take a 3D image of the baby’s head to use for creation of the helmet.  This replaced the process of making a plaster cast, which I guess some offices might still do if they do not have a scanner.  The scanner takes about 1 1/2 seconds to get the picture, if the baby doesn’t move.  Here is a picture of Emily in her stocking cap getting ready for her scan on February 14.

Emily - 5 1/2 months old in Feb 2012

Here is a picture of Samantha getting ready for her scan when she was 5 1/2 months old!

Samantha - 5 1/2 months in Sept 2009

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Physical Therapy Evaluation

This morning we had a physical therapy evaluation for Emily to determine how bad her torticollis is and if she will need continued therapy.  They did a Multi-Disciplinary Evaluation (MDE) on her to determine her eligibility for Early Intervention services.  She scored really well in the Adaptive, Personal-Social and Motor skills portions of the evaluation and then scored average/well in Communication and Cognitive portions.   The PT determined that Emily turns her head to both sides well (something we really worked on), but her issue is her head tilt.  She is fine tilting her head toward her left shoulder, but her neck is tight when we try to tilt her head toward her right shoulder, and she cries (which is what I found when I tried to do that stretch with her).  There are some exercises that we can do to try to loosen up her neck, and we are going to meet with a PT through Early Intervention 1x per month in order to make sure that her neck is progressively getting better and to make sure that her helmet is fitting properly.  They will come to Emily’s daycare, and I can just meet them there for her therapy.  I am happy that we aren’t going to do PT more often than that since we will have so many helmet appointments, especially at the beginning.  We should have our first PT appointment within 2 weeks.

I plan to follow up with the orthotics office today or tomorrow in order to find out where we are in terms of insurance approval of the helmet.

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The beginning of our journey…

I’m completely new at writing a blog myself, but blogs in general have become my new entertainment.  I love reading what other people write in their blogs and seeing the creativity in their writing.  I’m not here to entertain you necessarily, although I hope that some days, I (and you) will find some humor in my life.  My goal instead is to inform people about plagiocephaly, or flat head syndrome.  It is not a life-threatening condition, and in fact, it is typically just cosmetic, and I don’t intend for people to think that I am making a big deal out of nothing.  However, it is something that I have now had to deal with not once, but TWICE, with my children.  Since my first child wore a helmet two years ago, I have known other families who have also had helmet experiences, and still other families that have noticed their child’s head shape BECAUSE Samantha wore one.   I think that more people are aware of helmets and what they are for, and hopefully, because of babies like my daughter, life has become less awkward for other families with children who have had them.

When I found out that my second daughter Emily needed a helmet, I needed some encouragement VERY badly.  I felt terrible that I was not able to prevent it, even though I already knew about it and what to do to prevent it.  I wanted to hear over and over that it wasn’t my fault, even though I already knew that and had consoled others about the same thing.  I had always tried to make light of the situation when Samantha had her helmet, and I knew that she was the cutest baby ever, with and without a helmet (I’m not biased or anything.)

I believe that Samantha had been born with plagiocephaly (her head was slightly misshapen and her right ear was smashed), so I had prepared myself to have another baby with a flat head if a similar situation occurred.  Samantha had been born at 37 weeks and was less than 5 lbs at birth.  I carried her very low in my pelvis.  When I was 34 weeks pregnant with Emily, I had an ultrasound that proved that her head too was very low in my pelvis.  The second thing I thought of (besides having another small baby early) was her head shape.  When she was born (at 38 weeks, slightly over 6 lbs), her head was perfectly round.  I was thrilled. I knew I wasn’t going to have another baby with a helmet, so I’d do what I could to prevent it.

Anyone who has had a second baby when their first child was a toddler knows how difficult it is to adjust to the second baby.  Samantha is a great sleeper, so when Emily was an even better sleeper, I was thrilled!  (This meant that I was sometimes able to get a decent amount of sleep, not that we were never sleep deprived.)  I knew that infant seats, bouncy seats and swings all contributed to flat head syndrome, so I was going to use them only when absolutely necessary and I wouldn’t use them for long time periods.  However, you still need to use a car seat right?  How many people wake their sleeping newborn after they arrive to their destination?  I didn’t.  I needed to eat with two hands sometimes, right?  I had bought a Fisher Price Rock n Play Sleeper, with the intention of using it only when necessary (it is very portable and works like a bassinet, but it is also reclined).  Unfortunately, Emily loved sleeping in it.  After a couple of weeks, we moved her to the crib and pack n play to sleep rather than using the Rock n Play Sleeper.  Otherwise though, I fed Emily on both sides, I used an Ergo baby carrier when we went on walks or to the playground and even the grocery store, I did tummy time, I got a Boppy Noggin Nest and thicker strap covers to keep her head centered in the car seat, I still RARELY used a bouncy seat or swing when she was awake, I turned her head when she was sleeping (actually, I started propping her up off of her right side with a rolled blanket).  But by her one-month well checkup, it was already too late.  She was already favoring her right side and her head was a little bit flat on the bottom right corner.  I was so upset.  Stupid me for using a Rock n Play Sleeper, or for letting her sleep in the car seat to finish that nap!!  Seriously though, do other people do ALL of these things?  Your newborn has NO neck control!  How do you keep a baby that sleeps 16 hours a day off of her head?  There were times in the middle of the night during those first couple of months that I would do ANYTHING to get my baby to sleep so that I could at least be half awake when my toddler woke up.

I was on maternity leave for 16 weeks.  After Emily’s 1-month well checkup, and especially after her 2-month well checkup, I made it my mission to improve Emily’s head shape.  When I mentioned her head shape to the pediatrician at her 4-month well checkup, he said “It doesn’t appear to be too bad.  I see just a tad of asymmetry when I look at it from the top.”  Then we told him that Samantha wore a helmet for 6 months and he said “Oh, well in that case, with that family history, we are going to send you to Children’s Hospital for an evaluation.”  I seriously thought it would just be a formality at that point and that her head wasn’t going to be severe enough to need a helmet.  I had been working so hard to keep her off of her head and to make her neck stronger!  Samantha’s asymmetry had been much more severe, so this just didn’t look so bad (although I of course knew it was there.)

Unfortunately, it wasn’t just a formality.  When Emily was 5 months old, we saw the nurse practitioner and a physical therapist at the Cranio-Facial Plastic Surgery center.  The first thing the nurse practitioner did was measure the diagonals of her head.  A quick subtraction told me that Emily’s head diagonals were 9mm off from each other (this is called the Anthropometric measurement.)  I knew that I was looking for less than 6-7mm to not need a helmet.  Samantha’s had been 16mm initially and then over 6 months in a helmet decreased to about 6mm.  I held it together in front of the NP and PT for a little while, but then I just started to cry right there in the office.  I was seriously going to go through this again?  The physical therapist said that she thought that Emily had a touch of torticollis too, so she was recommending physical therapy through Early Intervention.  So even though we had done some exercises and she had great neck/head control, her neck hadn’t improved enough.  Ugh.  They told me that if I hadn’t done all those things, it would have been worse.  I guess that made me feel better.  They also told me that I was a good parent for taking care of this and that my daughters would thank me for it.  Well, ok, I guess.

Emily’s first appointment at the orthotics office, during which her head was scanned by a StarScanner, revealed that her head measurements were only 7mm off.  At 6mm, a helmet is recommended and would be covered by insurance.  So we were JUST over the minimum.   Now, we are waiting for insurance approval (apparently, my insurance company takes longer than most to approve the helmets).  At that point, we will get rescanned and they will craft her custom helmet.  Emily will be 6 months old later this week.  Knowing that the optimal time to start the helmet is 6 months old, I was annoyed that my insurance company was taking so long to approve the helmet, ESPECIALLY when my deductible is so high that I will have to pay for most of it out of pocket anyhow.  After being mad for a few days, I decided that I shouldn’t be so worried.  Her head isn’t so bad, and it will correct with the helmet.  Samantha is proof of that.  So I decided that I should just enjoy her non-plastic fresh-smelling naked head as much as I can right now.

And this is where our second journey with a helmet begins…

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