My Helmet Baby (Squared)

Our family's journey with plagiocephaly

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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