Plagiocephaly: My Son’s Experience

I should have written this shortly after Maddox, now 2, got his helmet off (at 6 months)…hopefully my memory serves me right and I can provide some information for anyone looking.  I remember searching around on the internet for real life experiences with parents who had children with plagiocephaly and had to put their baby in a helmet.  The information I did find (and friends’ experience) helped me so I wanted to share.

Disclaimer: The info on this blog post about plagiocephaly is from a mom’s experience/perspective, with a child who had plagiocephaly.  All cases are different, this is our’s.

First of all, let me explain what plagiocephaly is.  Wikipedia says it best: a condition characterized by an asymmetrical distortion (flattening of one side) of the skull. It is characterized by a flat spot on the back or one side of the head caused by remaining in a supine position for too long.

Another condition he had was torticollis.  It’s basically when the baby’s head tilts to one side due to a wry neck.  Therefore, turning the head to that preferred side and flattening that side of the head…which then causes plagiocephaly.  This was our case at least.  There are tons of different cases that can cause these medical conditions.

What caused all of this?  Many things can cause this.  But for Maddox, he was extremely large in utero and stuck in a position for a really long time towards the end.  And if you remember my birth story, he was stuck for a ridiculous amount of time during pushing.  The doctors assumed he could have developed the torticollis in utero with not a lot of room to stretch and move around and/or the birth process.  But who knows.  Regardless, one side of his head was much flatter than the other.

How did I find out?

At 3 months he was pretty sick with a cold and I took him into the doctor’s office to get checked out.  At that visit, his doctor noticed his head and referred me to a specialist (craniologist).  He gave me a list of names he recommended.  I had a friend who’s daughter had to wear a helmet so I messaged her and she actually mentioned one of the names on that list and had great things to say about them.  It was Cranial Technologies in Dallas.  They have several locations around the U.S.  My friends’ doctor also had a daughter who had to wear a helmet and he used Cranial Technologies, so I figured that must be one of the best, if not the best place to go.  This picture below is at the pediatrician’s office when he recommended Maddox get looked at.

How did I feel about the “diagnosis”?

To be honest, I was bummed.  No parent wants to put their baby in a helmet all day, every day!  Plus, I worried what people would think (I got over this in about 1 day).  I didn’t know much about what was involved or what even caused it.  I blamed myself initially…maybe I laid him down too much, but the doctor’s office assured me it wasn’t my fault.  He wasn’t laid down any more than Beckham (actually less…big crier).

We were lucky in that we found out early at 3 months.  Luckily, he got sick and I had to take him to the doctor’s office where he took a look at his head.  Most doctor’s notice any problems with head shape at the 4 month well appointment.  It takes about 1 month to actually get the helmet after evaluation, insurance approval, and helmet fitting/molding.  So he was in his helmet just around 4 months old.  Babies’ heads are still forming up until 12-15 months.  The closer you get to 12 months, the slower the head changes, therefore, the harder it is to shape how you want.  The earlier you can get the helmet on, the faster their head will change, meaning a shorter time in the helmet.  The later you get it on, the longer the baby will have to wear it.

First Day with his helmet: October 22, 2014

How did he like the helmet?

Maddox’s doctor said “most babies aren’t bothered by it at all.”  It’s harder on the parent.  Which is true.  When I put the helmet on Maddox, it honestly didn’t bother him.  He had a very small forehead (even doc noticed), which is why it’s closer to his eyes than most babies (and again, the smaller they are, the more bulky it might seem), so the helmet sometimes came down too much into his eye area and I’d have to readjust it.  BUT the biggest problem was individual to Maddox…he would fall asleep with his hands on his forehead/eyebrows at the time, so the first time I put him down to nap, he cried and cried because the helmet was in the way.  It broke my heart and I almost ripped the helmet off of him and cursed it across the room.  Let’s just say, I rocked him to sleep A LOT for the first week or so.  He eventually just had to learn how to fall asleep without his hands in his face.  I’d say it took a week for the sleep to become normal again, but other than that, it really didn’t bother him.  Here’s an example of how he fell asleep with his hands.

It was hard to know how to dress him.  They told me the helmet would make him a lot hotter than it seemed and it sure did.  The weather was not too bad so a onesie was fine…except for this day apparently.  His cheeks were rosy from being too hot (I took his helmet off for monthly photos).

Halloween costumes were easy that year.  What do you do when your son has to wear a helmet?  Dress him in a football uniform of course.  I mean c’mon!

I keep referring to it as a “helmet” which is the unofficial term used, but he actually was fitted with a DOC band, which is created with a patented computer program to custom fit each baby.  You can read about how it’s different HERE.

The Results:

After 2 months in the DOC band, this is the before and after.  It says 11 weeks, but that was the time he got fitted to the time he got it off.  The date he got his helmet was 10/22/14, so he was in it 8 weeks, which is a relatively short time compared to most.  These results are incredible for 2 months.

Last Day of Helmet: December 23, 2014

He had just learned how to sit up on his own.

Involvement:

-His appointments at first were every week at first and then tapered off to every 2 weeks.  At each appointment they evaluate his head and shave off any of the helmet (inside) that they need to as his head changes.  As his head forms to the helmet, they adjust it as necessary.

-It gets pretty gross and smells.  They warned me it would never look as white as it did the first day, mostly inside the helmet (because of all the natural sweat).

-You have to clean it daily with rubbing alcohol.  I did this when he would take a bath.  I’d take off his helmet for bath time and while he was in the bath, I’d rub it down with alcohol and a towel.  That kept it fairly clean and kept the smell at bay.

-They have to wear it 23 hours a day.  Basically, he was helmet free during bath and bedtime routine.  Every now and then I would take it off for a picture or something, but other than that, it stayed on.  The first week, I took it off way more (which they said was okay).  They give you a schedule to ease them into wearing it.

-We also had to do stretches with his neck to help with the torticollis.  To be honest, I wasn’t very consistent with these. 🙁  They also recommended, I switched arms when feeding him or holding him so he wasn’t always laying on the flat side.  I also tried to move his head to the other side if he fell asleep in his car seat (but that only worked as long as he kept it there) 🙂

How do you pay for it?

Insurance should help cover it, but I have heard some horror stories regarding insurance and coverage (but that’s pretty much the story of insurance).  We are with Samaritan Ministries, so the entire cost of our medical bills was covered.  They have someone there that will help you with insurance, but for us, they just billed us and we submitted it to SM.  The cost is pretty high.

Look at that beautiful head 🙂

Overall, it was a little rough at first learning how to properly manage it all, but towards the middle, it was second nature.  It went by pretty fast for us, so I’m thankful for that, but I’d do it again in a heartbeat.  Our little guy today (2 years old).