So, your baby needs a helmet.
Hello to any readers I might still have after my unannounced break. I totally don’t blame any of you who pruned me from your reading list. I promise I’m still around though, and I do check in on my favorite blogs faithfully! I still need to weed through the hundreds of comment spam (do people really think that’s good for business? I mean, really?) so if you left a comment recently, hopefully I can dig it up and respond. And to the few sweet ladies who have emailed me – I promise to get back to you, even if it’s two months late. Embarrassing. I’m sorry!
Today I wanted to post about my baby girl and her plagiocephaly and helmet journey. I last left off with the announcement that she would be getting a helmet, but haven’t updated since, and it’s unfortunate because I really was hoping to document her journey better so that any parents facing this diagnosis in the future might find my blog and ease some fears. I Googled endlessly when we first found out Avonlea would need a helmet and came up with very little first hand experience, and I wanted my blog to be that source. Best laid plans and all that.
But! In this post I’m going to compile all my most important thoughts, tips and FAQs that I think will help make it a little easier for anyone else going through this. If you have any additional questions, please please leave them in the comments and I’ll add my answers to the post.
So, here it is. Everything I think you should know if you just found out your baby needs a helmet. Let’s jump right in.
- Don’t panic. Seriously. DON’T panic. I know it’s hard. I panicked like hell the day we took my baby to be fitted with her helmet. There are a million thoughts flying through your head and none of them are good. But I promise. PROMISE. It will be okay. It’s not that bad. Think of the future – your baby with his cute little perfectly round head – and that is what will get you through. It seems like yesterday that I was white-knuckling the steering wheel on our way to the orthotist on Christmas Eve, and six weeks have already gone by in a flash. And all that panicking? Totally not needed. This has been worth it.
- But what if my baby hates it? What about sleeping? This was my biggest worry. That she would cry incessantly and refuse to sleep for the entire three months. But you know what happened? She didn’t cry. At all. The orthotist plopped her helmet on her head and she totally didn’t even care that it was there. And, he told us that while some babies do cry, it’s not for long and ALL the babies he’s worked with got used to it almost immediately.
Some orthotists will have you follow a gradual schedule to get your baby accustomed to the helmet. We didn’t really do that because she seemed fine in it immediately. The first couple days were a little rough, and she didn’t want to sleep at night wearing it. That is okay and normal. Just take it off for the night. By day three or four, she slept in it all night for the first time and it was smooth sailing from that point.
- What if it leaves marks? It looks like it’s hurting her! The helmet should not be uncomfortable or painful for your baby. It may leave red pressure marks when you first take it off, but these should go away within 30 minutes. If there are any marks that don’t go away, any skin abrasions, or your baby seems to be in any pain at all, LEAVE IT OFF and call your orthotist. Trust me. You don’t want to irritate anything worse than it already is because that would mean an extended time of leaving the helmet off, which is less time for the head to grow properly. Your orthotist can shave off some of the foam on the inside on any spots that are causing irritation.
- You will miss that soft little head. There’s no avoiding it. You will miss the skull snuggles like crazy. I miss smelling her head the most. But, it gets easier. The helmet used to get in the way but now it’s simply a part of her, and I smother it with kisses just as much as I do any other part of her body. It just makes you cherish that one hour a day so much more. (Oh, and speaking of that – you’ll take it off each day to wash it. Word of warning. The smell? Is like that of 100 sweaty feet. It’s putrid. But you won’t care. I promise.)
- Decorating. If you’re anything like me, the helmet’s gotta be cute. It just does. There are several methods of decorating. I initially had Avie’s airbrushed at a kiosk in the mall. I quickly got sick of that design though and decided to paint it a solid color with just her name and a couple stickers added. Painting it is super easy. Just get regular acrylic paint and some Mod Podge sealer. Paint on 2-3 layers of the acrylic, drying between each layer. Once you’re satisfied with the look, paint on a couple layers of the Mod Podge. This leaves a nice shiny finish and prevents chipping. Then add any stickers and Mod Podge over those as well. Vinyl stickers work much better than paper. Bling Your Band is also a great resource for custom vinyl decals created specifically for cranial helmets and bands.
- I’ve heard Cranial Tech is the best. Yeah, I’ve heard that too. Unfortunately for me and thousands of other parents, there isn’t always a Cranial Tech close by. I’ve read about parents who traveled several hours in the car or even by plane to get to a CT (makers of the DOC Band). But what I’ve found in my research is that ALL of the helmet/band brands are effective and none are really “better.” You have to make your own choice as far as if you’re willing or able to make the trek to one. Me? I went with what was local and couldn’t be happier. Avonlea is in a Becker Band and is making absolutely amazing progress. It’s one of the most little talked about brands, which worried me at first, but it really doesn’t matter. As long as you get a proper fit and a good orthotist, any brand or company is going to do what it’s supposed to. Other common helmet brands are STARband and Hanger.
Another thing to keep in mind is that Cranial Tech makes what is called an active band. This means that the device applies constant gentle pressure to the head to help it grow properly. You may need to have more adjustments with this type of band. Becker and I think Hanger and STAR as well are all passive bands. Meaning the helmet is constructed in the desired final head shape and allows space for the head to grow into it rather than applying pressure. We only see our orthotist once a month. Both types are good, you just need to talk to your doctor and orthotist to decide which would work better for your specific situation.
- Take pictures! You will regret it if you don’t, I promise. Take lots of pictures of your baby in the helmet, as well as progress pictures of their head. You will want to compare the pictures as this is the best way to see progress. And, even though it might not seem like it now, you will want the visual memories of your baby in her helmet. It’s for such a short time in their lives and you will cherish the memories of getting through that time and coming out on top.
- Don’t be a hermit! Don’t worry about what people think. Take your baby out in public as you normally would and don’t be ashamed. Yes, people will stare. You will get used to it. For me, I just remember that by taking Avie out, I’m making this more common and more accepted. I haven’t seen another helmet baby out and about yet, but I hope to so I can make that mom or dad feel good about their choice and proud of their baby. Sometimes people ask questions (the most common being “What’s wrong with her” and “What happened to her”). I’ve even had a group of jackass teenagers make fun of her at the mall. Yeah, giant eyeroll. Just use it as a chance to spread information about plagiocephaly. I have met so many people who, after I explain our situation, say “Wow, I think *my baby/my daughter’s baby/etc.* could have really benefited from that treatment.” I also meet people who know of other babies who wear helmets.
And above all, feel confident in the choice you have made for your child. It really, really is worth it. You will never regret choosing helmet therapy, but you might regret it if you didn’t.
Okay, so that’s all I have for now. I hope this helps even just one person.
YAY for the both of you!!! what strong women you are. best of luck with continued healing and therapy.
nic @mybottlesup´s last blog ..gettin’ pretty wack-a-doo
Thanks for this post! For a while, we thought Elise would need a helmet. Her head was practically triangular. But it rounded out quickly, and quite well, when she started rolling onto her tummy and spending a lot of time sleeping and playing on her belly.
My friend, on the other hand, has twins who both have quite malformed heads but never got a recommendation for helmets — and they really, really should have. Now, they’re 16 months old and they’ll have to live with misshapen heads for the rest of their lives. Sad.
Two Makes Four´s last blog ..Shopping: Tips and Confessions
Alicia Reply:
February 9th, 2010 at 6:41 pm
@Two Makes Four,
I’m glad hers rounded out! I know a couple kids who definitely should have had one too and didn’t. Really makes me glad we caught it early.
The experience has been almost painless. I anticipated it being a constant burden but I never remember it is even on until it is bath time. She has done so well with it and I couldn’t be happier with her progress.
you’re daughter is beautiful and i personally love the job you have done with the helmet. You are so strong for dealing with this and not ignoring it. There’s a mom at a day care I work at and the child should of had a helmet and I think it’s to late now. it’s sad.
I didn’t realize how fast the helmet works, wow! She looks great and is such a cutie!
Gwendolyn´s last blog ..exhausted.
Hi Alicia,
I’ve been following your site for awhile now; your boys and your little lady are so cute!
Just a thought… I bought that same plastic seat (the one that Avie is pictured in) for my son and my pediatrician said that it’s problematic because it doesn’t do helpful things to their developing backs.
Did your pediatrician say something different? Do you have any more information on the use of that seat?
I returned mine in a panic… but have been curious about it since.
Avie is beautiful! Your designs and bows are beautiful too! Good luck with the etsy store!
Alicia Reply:
March 25th, 2010 at 10:11 am
@Nathalie,
I have never asked my pediatrician about the Bumbo seat – but I know it does receive mixed reviews from doctors and physical therapists. Some love it, some hate it. As for me, I wasn’t too worried about it because she never stayed in it for an extended period of time (probably no more than 15 minutes at a time). She loved to sit in it and watch her brothers or play with toys back before she could sit unassisted. We don’t use it any longer since she can sit up by herself. Google brings up several arguments both for and against the seat so I think, like anything else, you just have to go with your gut.
Alicia Reply:
March 25th, 2010 at 10:16 am
@Nathalie,
I also wanted to add, for us the Bumbo was a lifesaver because it kept her off her head, allowing it to heal faster. Using something like a bouncy seat would have caused unnecessary pressure on her healing head.
Wow four weeks and that’s the result? AMAZING! I’m glad that you’re posting updates and pictures…many parents will benefit from you sharing your first hand experiences.
Teenagers can be such dorks. Hopefully they shut their mouths after you educated them!
P.S. My ten month old can’t stop smiling at Avonlea’s pictures on the computer lol!
Sarcastica´s last blog ..The Double Edged Gift
Thank you so much for this post! We are taking my 5.5 month old son tomorrow to get his helmet and I have been a mess…worried he won’t sleep, worried it will hurt him, worried about what other people will think, etc! You addressed alot of my concerns and it’s so helpful to know that others have been through it and have had such great results. She’s a doll! thanks again
Alicia Reply:
March 25th, 2010 at 10:07 am
@Jamie,
I’m so glad this post helped! I hope your son’s transition into his helmet went smoothly. I would love to hear how he’s doing!
I’m glad you’re back. Clearly, I am just as bad since it took me like two months to notice you’re blogging again.
oops.
Anyway, Avie is getting cuter and cuter! She’s changed so much since your last blog! That dimple is killing me, she is so freakin cute. And WOW what a diff in that picture in just four weeks! Go Avie! She rocks that helmet.
Rachel´s last blog ..Loser.
Thanks so much for this post. Have never been to your site before but I’m so glad I found it. My little man will be getting his helmet on Wednesday. We went with our local Hanger office. Don’t have his cranial band yet, but are happy with them so far. I had many of the same questions…starting with freaking out with some tears….and moving, slowly, into being proud. Hopefully I can continue that sentimate once he actually starts wearing it. Saw a onesie on flatheadedbaby.com that says, “Helmets are the new Black”! Love it! Can’t wait to get it and start seeing results. Thanks again!
I wish the pediatrician we saw a million times suggested a helmet for my 2 kids, they both have misshapen heads, all they told me to do was encourage my kids to put their heads to the other side, they are now 3 and 4 and still have the same problem, although I think it is slightly better as the only people who notice now are doctors or nurses. I’m so glad your daughter got the right treatment.
Thank you so much for this post – I just got the referral today and was in tears picturing everyone making fun of my son. I love him to pieces and know this will be the best thing for him in the end but sometimes it helps to hear it from someone on the other end.
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Our son is 16 months and just now getting his helmet. To the one who said that they know some twins for whom it’s too late, it may not have been. If the kid is in the 90th percentile or above you can still get decent results through 18 months. ****HOWEVER****, it’s best to go, and the results are much better, when they are much younger like the baby mentioned in this blog. The reason for the 90th percentile thing is that at that percentile he and his head are still going through substantial growth. Actually he is 95 percentile.
Anyway,I’m really pissed at our baby’s pediatrician for never recommending this. It’s really sad. Now insurance doesn’t cover it (because he’s older than 12 months) so we have to pay out of pocket, and the results won’t be quite as good.
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Thanks for this. I sat here in tears while I read it, knowing that if you’re okay, and all of these other moms are okay, I’ll be okay, too. We finally made the decision today to get my daughter a helmet and it has been a hard day. It’s uplifting and encouraging to hear you speak about your experience. Thank you.
Terri´s last blog ..Young at Heart- Mommy Hook Winner!
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