My Helmet Baby (Squared)

Our family's journey with plagiocephaly

The beginning of our journey…

on February 20, 2012

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…


13 responses to “The beginning of our journey…

  1. Austine says:

    I just found out today that we were recommended to move forward with the helmet for our first and only son (11.7 oblique diag diff), and wading through this sea of decisions and emotions has been “fun” for the last few hours. I can’t thank you enough for creating this blog! It’s great to see how another family handles this and that it really isn’t a big deal (though it will take some getting used to). I especially love your later tip on writing the name on the helmet, and your encouraging revelation that more people are supportive than judgmental (my biggest concern, next to his health, of course!). And congrats to your youngest on her graduation!

    • myhelmetbabysquared says:

      Glad my blog helped you! It is a little rough going through it, but looking back, it was just a little blip in time, and we more than survived! Good luck! Also, if you are on facebook, I would like to recommend joining the group. It is a tremendous group of ladies and everyone is VERY supportive (and responsive!)

      • Austine says:

        Thanks for the referral! Nothing quite like Facebook updates from others who know what you’re going through to brighten your day. Well, except maybe real human contact, but you know what I mean. 🙂

    • Suzanne says:

      I am in the same boat and feel like a bad Mommy. 2 out of three of my children had to have one. My first baby never dug. Currently my 4 month old has one. My first child fyi have it, had it for many months. He was 14mm off. It was pretty bad. My lithe girl is inky :mm off. Za

      • myhelmetbabysquared says:

        You know you aren’t a bad mommy, but I know the feeling. 😦 I am convinced that the mother’s anatomy and the way the baby is positioned in utero has a lot to do with it. I know that many people only had one child in a helmet, but I keep hearing of more and more people with more than one. You aren’t alone in this!!

  2. Helmet says:

    I can completely identify with you! Thank you so much for writing your blog. My daughter was in a helmet, and it completely devastated me at the time. I had all the same feelings as you. I then noticed my newborn son always turning his head to the right when he was sleeping. A flat spot had already developed by one month. I spent many sleepless nights obsessing over it. What would my family and friends think? TWO helmet babies? We started physical therapy at two months and I pushed for a helmet eval at 4 months. He’s in it now (first week!). We’ll see how it goes. I know I am doing the right thing for my baby, but it still feel guilty, ashamed, sad, etc.

    • myhelmetbabysquared says:

      I so hear you. Well, you aren’t alone! Check out the Plagiocephaly Support group on FB if you get the chance. There are some great ladies on there! Link in the comment below.

  3. Ashley says:

    I’m sobbing reading your story because it’s as if I wrote it myself. We are in the SAME exact situation with literally the same details….and my daughters name is Emily. Thank you so much for writing this blog!! I stumbled upon it while trying to find a helmet design. We get the helmet next week, right in time for the summer.

    • myhelmetbabysquared says:

      Not happy to hear that you are going through this too, but know that you aren’t alone. When I mentioned having 2 kids in helmets to our orthotist, it wasn’t shocking to them, so that made me feel better. Check out the Plagiocephaly Support group on FB. Some great ladies on there. The link is within another comment.

  4. Kacie says:

    Thank you! We’re just starting the process of getting a helmet for my son. I’ve been trying to do research, but the most I can seem to find are product pitches from the various helmet makers with “What is Plagiocephaly?” written somewhere on the page. I have learned more from your blog in the last 20 minutes than I have in the last week! I cannot tell you how helpful it is to finally get some real world information about living with these things and not having that information be skewed by somebody trying to sell me something.

  5. Melissa Aguirre says:

    I have found your blog so encouraging!! I stumbled upon it through one of my many searches for plagio/brachy. My 5 1/2 month old daughter has been in her starband for a week now (97% CI and 4mm flat spot- so we are treating more for the brachycephaly). The days are fine but nighttime is unbearable. She is a bit of a high needs baby… so bedtime/sleep has never been easy, and now the helmet has compounded things. Do you have any tips to helping with sleep? We already had one adjustment to make sure it wasn’t squeezing her head too much, so it should fit pretty well. Any advice is appreciated!! Thanks! – Melissa

  6. Jessica says:

    Thank you so much for sharing your story, I just went yesterday to have my daughter evaluation and mentally I kept putting it off… she is a moderate case, but my husband and I decided it is best for her to wear a helmet. I am actually so sad, but I know it is the right thing. I was guilty of having her sleep in the rock n play, but we are new parents.. No one told us how bad the rock n play is!!!! We also take her to physical therapy so her head has gotten a lot better, It is so hard to keep them off their head.. Especially if they are already born with a slight flatter head, they say it developed when they are in your tummy, my daughter favored my right side. We are waiting for our insurance to get back to us, then we will know what they cover and we are going to follow through with the next steps on getting the helmet. How did your daughter’s sleeping go the first night with it on? How do they get use to it.

    Thank you so much for sharing!

    • myhelmetbabysquared says:

      I really think that literature about the issues with reclined chairs/RNP and even car seats should be distributed to all new parents. People LOVE the RNP, and I knew about the issues with reclined seating from my first, but I thought, hey, I’ll just try it out. Babies sleep SO well in it! We only used it for 3 weeks and I noticed that she was turning her head and we stopped, because we knew about tort. But it definitely started in utero for my girls too. They dropped really early and my first daughter was also born with a slightly flatter head. My second daughter had a smashed nose, so I know she was squished too! I hope that you are approved and are on your way with the helmet soon!!

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