Hayes’s Noggin

Thank you all so much for your comments, texts, tweets, emails, and phone calls yesterday. I could really feel them and so much of my worry was taken away. Todd and I have a fairly big decision to make, so thank you for your prayers.

Our sweet Hayes is healthy and wonderful, and we are so grateful. We have so much to be thankful for, and while this situation is a big thing in our lives, it may not seem like a big thing to someone outside of our family.

A few weeks ago at Hayes’s doctors appointment, his pediatrician told me that she wanted to refer us to Cranial Technologies for a consultation to see if Hayes needed to wear a doc band to correct his head shape.

This was something that I had been concerned about for the past few months. Hayes’s head is flat. And it’s really not just a little bit flat. It’s actually flat. Around the time he was 3 months old I noticed that his head was getting a little flat. And as time has gone on, our pediatrician has told us that she wasn’t concerned yet, but wanted to keep an eye on it each month at his appointments.

And as time has gone on, it just hasn’t improved. It’s not obvious when you look at him from the front, but the profile view makes it pretty obvious.

While Hayes can crawl now and he has been on all fours and sitting up for a few months now, his head still hasn’t rounded out at all on its own. When he’s awake, he’s not on his back at all. But when he’s asleep, he still sleeps flat on his back.

Tummy time “practice” never really phased Hayes. He would actually just lie down and doze off when I’d put him on his tummy on his mat. He’s just the most content kid.

When Hayes was 2.5 months old, he started rolling over. At this time, we stopped swaddling him and hoped he would start sleeping on his stomach. But he never did. He loves sleeping on his back (and sometimes his side) and is comfortable sleeping like that. We wish he would just flip on over and be a tummy sleeper.

The clinic we visited yesterday is in Charlotte, which is about 90 miles from our house. We chatted with a few friends who have gone through all of this to find out a little bit about what we could expect.

They took some photos of Hayes’s head from a few different angles so we could really get a good look at what his head looks like.

Mommies always see their babies as perfect. Seeing the pictures of Hayes taken at the clinic were pretty startling. It looked a lot worse than I’ve ever noticed before.

We saw the physical therapist and after watching Hayes and talking with us, she recommended the doc band treatment for 3-4 months. She said that he has Brachycephaly.

We are encouraged that the treatment can correct his head shape. And it’s actually a really light weight apparatus. It only weighs about 7 ounces, I think. So I don’t think it would really bother him all that much.

He would need to wear it 23 hours per day. And it’s imperative that he wear it while he naps, sleeps, and rides in the car seat.

But then the physical therapist told us that it’s up to us. This is our decision to make. She recommends he wear the doc band, but pointed out that if he doesn’t wear it he will still be healthy. This is an appearance issue. But he’s a boy and won’t have tons of hair to cover up his head shape and the doc band is more often recommended for boys because of that. She categorized Hayes’s head in the “moderate to severe” category.

So, the doc band is recommended. But he’ll be fine if he doesn’t wear it. It’s also really expensive and insurance rarely covers it. And the clinic is 90 miles away and treatment would require visits to the clinic every two weeks.

Then there’s the concern that your baby is “different” and will be wearing something that causes people to stare and ask questions. He’s just a baby and he’ll never know. And none of that matters, I know. But my mama heart breaks a little bit when I think that people may whisper about him.

The benefits of wearing the doc band definitely outweigh our concerns, worries, and the hefty price tag.

At this point, we’re waiting to hear back about the insurance situation and then we’ll decide based on the information we have.

Todd and I went back and forth about whether or not I should blog about this, but I’m hoping that I can connect with moms who have gone through this or who are going through this currently.

Has anyone been through this before?

I know that we would probably regret not going through with treatment, but I know we wouldn’t regret doing it for Hayes.

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Comments

  1. Not a whole lot of input from me… but a couple kids at Warren’s daycare have had to wear them. (I’m assuming it’s the same thing) I was just going to let you know there’s were ‘hokie’ and it looked like they came that way – not ‘home bedazzled’. So you could probably get a gamecocks one for Hayes! :) Too bad it’s not during football season.

    And *hugs* cause all mommy/daddy decisions are tough!

  2. Michelle says:

    Hi Erin. I enjoy your blog! My son (now 10) also wore a helmet for plagiocephaly, caused by torticollis. We checked into the DOC band, but didn’t have access to a clinic nearby. He wore a Starband. I remember your exact concerns. Ours was not covered by insurance either. In the end, I was happy that we chose to have him wear the helmet, as I would have felt terrible if his head shape was noticeable and we didn’t try to do something to correct it. His head looks fine, although he still has a bit of a flat spot on the side, as he started wearing the helmet a little late. The kids adjust quickly, and now (years later!) it just doesn’t seem like it was that big of a deal. Good luck with your decision — I wish you the best!

  3. Nicole Berry says:

    Hi…i love your blog and read it all the time…i dont blog ( i say im too busy with two little girls- but i sure have enough time to read several of them :) I just wanted to tell you that my little girl Lyla had the same thing…she is now three. We didnt do the band, partly because our pediatrician is on the board against the band, but partly because of all the research he showed us. The thing that most got us that most kids at the age of three start rounding out there heads naturally. I wish i could show you a picture…her head is the exact same as my older daughters. Now, it did take a while….she has really, really blonde hair and it is fine and thin…so that really didnt help much. I just wanted to give you my experience. Im not against the band at all…im kinda one of those “whatever works for you moms” hope everything turns out well…your family is precious!

  4. Charissa says:

    Your baby is adorable! I just saw a helmet recently that said “Just Fixin’ My Flat” on the back. I about died laughing. I hope you have peace about your decision. You’re a strong, powerful and good Mommy!!

  5. Christy says:

    I don’t comment much on your blog, but wanted to let you know we had a helmet for our son. Our story sounds exactly like yours. We finally made the decision to get it (without insurance — United Healthcare was making it hard for us and making us jump through hoops so we decided against the hassle.)

    I was embarrassed to get funny stares too, so when we would need to run into the store I would just take it off. I felt like what could 30 min possibly do, right? This worked for us, he did wear it at all other times and it rounded out our son’s head beautifully. Jackson’s case was seen as “cosmetic”, but it was noticeable. He had a flat spot because he is a thumb sucker and didn’t move around at all at night.

    Our office was just around the corner, which helped because the 1st few weeks we were having to go back 2-3 times a week because it wasn’t fitting correctly. You’ll notice a big difference right away and then the last month or so, the shifting tapers off.

    Just wanted to share my feedback with you, hope it helps! :)

  6. Beverly Steinhaus says:

    We struggled with having to make the same decision for Jack. That first appointment was so hard. My husband cried the whole way home….and he NEVER cries! It was so hard to watch them draw on Jacks photos and point out what was wrong, but I must say that it actually made me more confident that we were making the right decision and that there really was a problem that needed fixing. Jack was 7 months old when he got his band, and he wore it four months….during the hottest part of summer! But, it never bothered him.
    i would suggest that you not make your appointment to get the band on a Friday.Jack got his on a Friday and then experienced redness the first night. There was nothing I could do but take it off of him for the entire weekend and wait for them to adjust it that Monday. That was the ONLY negative thing that happened the entire time! Who is your technician! We had Lisa, and she was awesome! And, since we were from out of town, they would play with jack in the office and let me run to the restroom, etc. before we got back on the road. I would also take bottle warmer and woumake heat up Jack’s bottle during his appointment and stay in the room and feed him afterwards. We loved a place called Dillworth Neighborhood Grill just down the street. Yummy!
    i was so nervous about how people would react to seeing Jack in his band. Honestly, I was nervous about how I would react as well. How would he look? Would i still be able to snuggle him? But, the moment they put it on his head it was no big deal. He was still my cute little butter bean, helmet and all! And, To my excitement, I could still get good snuggles from my sweet boy. As far as the general public, I never had any bad experiences. In fact, people went out of their way to be kind to us. Since Jack had his name on his band, strangers would say “hey Jack!” when were out running errands. He loved all the attention! And, Lots of folks would actually come up and say their children had had one or that they knew someone that had a helmet. I was stunned at all the sweet folks that went out of their way to be kind! I did hear a few children ask their parents why “that baby is wearing a helmet.” But, the parents always reacted appropriately….even though their answers weren’t always accurate. Did they seriously think I made my child wear it because he fell down a lot?! Several adults did ask me why he was wearing it in a polite way. Everyone was eager to understand and was very respectful. No negatives here! In fact, it was more of a shock when he got the band off and wasn’t getting the attention anymore! Ha!
    We were so happy with the results….only wish we would have put it on him sooner so that we could have had more correction time before his skull hardened. But, we are thrilled with the changes it made to his head shape and would do it again if faced with the same problem with another baby in the future. Oh, and even though insurance initially denied covering, we got a check back for all but $45 of the $3,000 we paid. We were pleasantly STUNNED!
    Sending prayers to you and your sweet baby! I know that the weight on your shoulders is a heavy one…I’ve been there. Just know that you are making the best decision possible for sweet Hayes!

  7. This post is so inspiring because I’m taking my son for his initial consult to the same doctors in Charlotte on Wednesday.

  8. Hey Erin :)

    I will continue to keep you and your family in my prayers as you make the decision on what us best for Hayes. It’s only normal as a parent to voice your fears and concerns, and I would feel the same way about feelings of not wanting people to wonder why my baby was wearing the band. I read a blog The Frazier Four and here are the links where her son, Gavin had the cranial band and then after he got to remove it and it shows what improvement. I hope this helps.

    http://fraziermommy.blogspot.com/2009/09/what-week.html

    http://fraziermommy.blogspot.com/2009/11/good-riddance.html

    Continuing to pray :)
    Laura
    laurasblondemoments.blogspot.com

  9. Hi Erin, My friend sent me your website because my daughter is getting ready to get a Doc Band. I really enjoyed reading what you had to say and other people’s comments. I too struggled with the decision about blogging about it, but my husband and I have had such mixed feelings about the situation that it felt good to share my thoughts.

    Thank you so much for sharing your story!
    Ashley

  10. Melissa says:

    I have been going thru the same thing for over a month now! I just got the approval Thursday. My son Brenton is five an a half months old he has been for his consultation already,he has to go for the measurements in the morning at 8:00 we are about 50 minutes away and it is 3:50 am now I have been up all night reading also trying to find a design to make this whole experience better and cuter for him!! I also worry as to what I’m going to hear people say about “MY PERFECT” child!! I know in my heart and mind we making the right decision and what is in his best interest for his future!!!! We have been told that there is a chance even after approval from insurance that they will not cover it so I’m prepared to fight the battle all the way!!! We also have a 9 year old son and he is concerned for his brother but I have put it in Gods hands and I know this is the best decision for him!! He is just the perfect content baby also!!!!!!! Thanks for your blog it has helped me tonight to be at peace reading all the comments and I hope everything is ok with the decision you made for your child!!!!!! Thanks!!!

  11. My heart aches for you. I just found your site and while it’s about a year after you posted this, I found it still. We’re going through the same thing right now. Our little mans head is severe too, and he has positional plagiocephaly. I completely have the same emotions as you. It doesn’t seem like as big of a deal to other people but to me my heart hurts for him. For the exact reasons you stated. While we are also grateful it is something that can be fixed. I too fear the looks and stares from unwanted and rude people. If for no other reason I have a whole new outlook and empathy for the parents of little babies in helmets. Before it was no big deal, but now they’re just so adorable. My son is just over 3 months and we’re going to Cranial Tech today. We’ve been doing pt for over 6 weeks and repositioning and his head is still bad. Thanks for the encouragement I need it!!

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