Our plagiocephaly journey: Reflections on the helmet

Plagiocephaly helmet reflectionsWhen we first started the plagiocephaly helmet it was difficult for us. I tried to decorate it and make it feel more ‘girly’ but honestly, it was not something I really wanted. Now that it’s been one month since the munchkin graduated from her plagiocephaly helmet it’s much easier to look back on and say it was worth it. This past month has given me plenty of time to reflect on how our plagiocephaly went. Here are my thoughts:

  1. The helmet is only half of what you need. The other half is a really good orthopedic specialist who understands plagiocephaly and how to fix a baby’s flat head. There is a limited amount of time for this to occur, so someone who wants to ‘wait and see’ may wait too long and then there won’t be anything you can do to fix it. We were very lucky to have a wonderful doctor who explained everything to us and what he was doing to make sure the helmet was fitted properly and her head grew appropriately.
  2. It was worth it. Yes, the 5 hour round trip drives for a thirty minute appointment seems outrageous, but I feel like it’s better to spend the time now rather than have a child who may never have a round head. Our specialist even joked that the helmet cost more than his first car (mine too!) but we do crazy things for our children.
  3. It takes commitment. We kept the helmet on for about 22 out of every 24 hours. It’s supposed to be on for 23 hours every day, but 22 hours fit our schedule better. I do not think it would have worked with much less than what we did. We occasionally took the helmet off for bathing, photos, and eating (who wants to clean spaghetti out of a helmet? Not me!), but other than that it stayed on. If you’re not going to be committed to keeping it on all the time don’t bother.
  4. I do not miss taking it off and putting it back on. I was terrible at this. My husband was much better at it than me. I’m guessing it feels similar to someone putting a motorcycle helmet on you. Not terrible, but certainly not super comfortable. It did not help that it made me feel super guilty all the time.
  5. It brought my husband and myself closer together. It was one of the first major decisions we made regarding our daughter and we supported each other in doing it. I cannot imagine doing this without my rock next to me. The fact that we both agreed upon this decision and lived through it together is something I am so glad to have done, even if it wasn’t the funnest at times.
  6. I will do anything for my daughter. She has me wrapped around her little finger. She smiles at me and I love it. She needs a helmet and I’ll buy it. I know I’ll tell her no a lot in the future, but this was something I was more than happy to say yes to. I mean, look at that face!

Madison without her plagiocephaly helmet. After treatment was complete.

 

 

Week One: The baby & the helmet

The past few days Madison has been doing great in the plagiocephaly helmet. She’s adapted well and, other than a struggle keeping her head up during tummy time, she doesn’t mind at all.

I’ve been trying to decorate the helmet every day with something new. I have a few different vinyl sheets from Hobby Lobby and have been using craft cutters on them so far. I’m hoping to borrow a Cricut soon and do some more intricate designs. So far, we’ve discovered that the smaller the vinyl, the better it works. Large vinyl stickers have problems because the helmet is round and they are not.

This week’s helmets

Plagiocephaly helmet with a bow

Plagiocephaly helmet with a bow

Plagiocephaly helmet with polka dots and a bow

Plagiocephaly helmet with polka dots and a bow

Plagiocephaly helmet with sparkly pink flowers

Plagiocephaly helmet with sparkly pink flowers

Plagiocephaly helmet with the Conq mascot

Plagiocephaly helmet with the Conq mascot

Madison rocked the helmet during week one. Our babysitter could not figure out how to take off the helmet so her adjustment schedule wasn’t exactly what the doctor recommended, but it seemed to work. We did worry for a little while because the helmet was rubbing a lot on the one side of her head and was causing it to make her skin end up almost raw. We ended up putting a band-aid on it and that seemed to do the trick. After two days the spot was healed.

The most exciting part of the week was taking Madison to her first basketball game. She got a little overwhelmed by the noise, but she got to watch a great game. She’s so long already, maybe she’ll be a basketball player in the future. She sure seemed to enjoy it.

Day One

Yesterday was officially day one with the plagiocephaly helmet for baby Madison. Day one entails having her wear the helmet for an hour and then giving her an hour without it on. Here’s what we’ve discovered so far:

  1. The helmet makes her HOT. We’re down to a short-sleeved onesie in January because otherwise she was getting too warm. Her head was so sweaty the first hour I immediately changed her.
  2. She doesn’t actually mind the helmet, only having the helmet put on and taken off. If she had it on all day she might be okay with it.
  3. The helmet is more weight that she can hold up with her neck. It has made tummy time a little more challenging.
  4. The helmet makes me feel like a bad parent (I know I’m not). I know there’s nothing I could have done to make her torticollis stop her head from flattening, but i wish there was.
  5. She’s still the cutest baby I’ve ever seen, even with the helmet. I mean, look at that face. 
Plagiocephaly helmet day one

Plagiocephaly helmet day one

Part Three: Plagiocephaly journey, the helmet

I’m cataloging our experience with plagiocephaly and having our baby wear a helmet. You can read more in the first two parts: Before the helmet & The fitting.

This week we officially obtained Maddie’s helmet. It’s expensive because it’s all out of pocket, but we keep telling ourselves it will be worth it in the end. When we ordered it we were given the options of having it with a design or solid color. We chose solid pink so we could accessorize it for her. The patterns they had were not our style at all.

My first attempt at a photo in her new helmet

My first attempt at a photo in her new helmet

Madison did not seem to mind having the helmet fitted, but she did struggle with the added weight on her neck. She continually bent over every time they put it on her, which made us feel guilty. Again, we keep telling ourselves it’s worth it in the end.

We were given a ‘breaking in’ schedule that slowly preps her for wearing it 23 out of 24 hours a day. Day one is one hour in, one hour out, and she doesn’t need to sleep in it. It builds up to all day, every day including naps and nighttime. Thankfully, they told us how to clean it and it’s pretty easy, only a 50/50 mixture of rubbing alcohol and water spritzed on and dried with a soft cloth. We were told ‘it will smell’ if you do not do this every day. So, we will definitely be keeping up with that. I cannot imagine having a smelly baby helmet.

After the appointment we scheduled a two week follow-up and headed home. Since it was already half way through the day we decided to start the ‘break-in’ schedule the following day. I think we both felt we’d traumatized her enough for one day. She just looks so sad and tired wearing it.

Madison in her plagiocephaly helmet

Madison in her plagiocephaly helmet

Part Two: Plagiocephaly Journey, The fitting

This post is a little delayed, but I’m finally getting around to writing it. Truthfully, I debated not posting this because this part of the journey was far easier than I anticipated. If you haven’t read it already, I’m cataloging baby Madison’s journey with plagiocephaly and helmet wearing. You can see more about what that means in part one.

We were supposed to go to Wichita on Martin Luther King day, but due to an ice storm, we postponed that visit until Friday. The only time they could squeeze us in at required is to get up at 4:00am to hit the road. We made it to Wichita and stopped at Panera on the way in (what can I say, I love Panera and there isn’t one anywhere near where we live). Thankfully, the Panera and doctor’s office actually share a parking lot. I have a feeling we’ll be getting a lot more Panera for a few months.

I had seen a picture online that made me believe that getting fitted for a helmet involved casting the baby’s head in plaster and would be simultaneously time consuming and a huge mess. I was surprised when the doctor didn’t pull out any casting material. Instead, he had a suitcase-like box he pulled a long baby hat out of. He called it a ‘bonnet’ even though it’s not like a typical bonnet. He proceeded to tell me to hold Madison on my knee and he put this bonnet on her head. She was not a big fan. 

Being fitted with the bonnet

Being fitted with the bonnet

Once it was on her had James try to distract her to look a certain way and hold her head fairly still. The doctor then took what looked like a checkout scanner and started scanning her head. A screen in the suitcase-like box registered these scans and created a 3D image of Maddie’s head. It was pretty slick and really only took about 10 minutes. Once that was done he said he could have the helmet back by Wednesday! We thought we’d have to wait for two weeks! We scheduled the appointment and left. Yep, we drove five hours round trip for about 10-15 minutes of the doctor’s time. I’d be upset, but this is the only doctor around who specializes in this area.

The look on this face says it all, not a big fan

The look on this face says it all, not a big fan


Madison didn’t mind this visit at all, although she was so tired she fell asleep almost immediately after leaving. I was glad she didn’t have a meltdown while getting scanned, she’s been great with the doctor so far.