Miles of Life ~ My life as a donut Kylie Donia

intro to helmet baby

October 20th, 2012 by

Every since they handed Mackenzie to me, she has been my perfect little girl. But there have been tough days. The most memorable of which was just recently, the first time she was anything other than perfect. We were planning to do a nanny, and that fell through the week I was going back to work. I put on a brave face, and tried to just move on. And the next day was Mackenzie’s four month doctor appointment. And all was going well. Then her doctor said it looked like she has a bit of a flatter head than she’d like to see, and that we should get it checked out. It was the first time anything was other than absolutely perfect with my little girl. It was like a weight slamming into me. It was too much to add. I cried.

I have listened, and I have learned more about plagiocephaly. I can now say, and my logical persona does truly believe, it was not something I (or we) did. It is actually something fairly common in these days with babies sleeping on their backs. Yes, car seats and swings contribute, and I use those things. I do use her car seat to drive her places, and her swing for naps — that is all appropriate, and valid use. She was never just in her swing all day, and she has done tummy time. It wasn’t something we failed to do, or caused by something we did. Mackenzie is a great sleeper. She loves to get 10-12 hours at night (with a quick feeding or two). She takes some great naps. And no matter what we did, the time asleep was enough back time that her head got a flat spot. And because we love her and will fix anything we can, we are addressing it as best we can.

My emotional persona, on the other hand, still has high and low spots. Yes, I still sometimes feel like I did this to my child. I look at a red mark on her head as we are figuring out the fit, and I feel I have done this to her. I see people staring, and feel like I did this to my child. I hear a child whisper “mommy what happened to that baby’s face?” and I want to hear the mom’s answer, and tell them it’s nothing that happened and that she is perfect and beautiful and wonderful. But I just hold in tears and keep walking, and tell my little girl I love her.

But there are times I feel like super-mom. I can take care of this child, and I love her, and really it is just not a big deal. And I can share what it really is. Like with the curious little boy at her school the other day, who was peeking at her as we got ready to leave. And who I told some basic info about her helmet. Something along the lines of “her head has a flat spot from sleeping really well, and this will help fix it.” And he told me about breaking his leg, and how he had a cast to help it grow correctly. And I smiled.

First time in the band

So a bit more about how she got her band. We are fortunate that our doctor noticed the flattening, and directed us to the wonderful folks at Cranial Technologies. All they do is help fix head shape of babies 3 to 18 months old. We are just starting, so she got her band before she was 5 months old. Her plagiocephaly is not severe. Our technician Pam (who I can’t say enough nice things about) estimates she’ll need a band around 8 weeks. 8 to 12 weeks in the band is average for children who get started at this age. This means wearing it a minimum of 23 hour a day once the adjusting time is done (it takes a few days of regular removing and checking to make sure it is fitting exactly right – we actually are stil in this process). Then it will come off when needed for a bath and band cleaning each day, as well as when needed for clothing changes. We go to Pasadena about once a week for them to check on the band and adjust it as needed.

One of my first reactions was to be sad, that I had to put this *thing* on my adorable little baby. That I don’t get to feel just her against me as I feed her. That she wouldn’t be cute. So I focused on decorating it, and planning what we’ll do to make it just hers. And once I actually got it, and saw it on my little baby, it really wasn’t so bad. She looks different, but in ways even more cute than ever. And when I feed her, suddenly I am super-aware of her little hands playing on my side, and I notice her smiles and eyes.

Sometimes there are stares. Sometimes I have to smile when it is the last thing I feel like doing. Sometimes I hear wispers instead of questions. More often I see smiles, and feel love. Ane she is still my perfect little girl.

Some facts:
* 1 in 30 babies, or even 1 in 10 or 1 in 6 according to some studies, have plagiocephaly.
* Treated before 6 months of age is the most effective.
* Flattening has no ties to developmental, physical, or social growth. Brain development is not affected.
* Banding is not purely costmetic — the flattening can contribute to TMJ and sleep apnea, among other things.
* You can ask me questions. Really. I’d rather that than hearing wispers, or sympathetic smiles.

I like how my mom explained it after her reading: it is like braces, for your head. And we are still planning the decorations.

Pumpkin patch trip

7 Responses to “intro to helmet baby”

  1. Jeremy Brady says:

    She is as cute as ever! One of my classmates had her first girl 2 & 1/2 months into PT school. She too has plagiocephaly (around month 5, if I recall correctly) and her custom band. Everything slowly adjusted back to where things should be. The family’s biggest concern was TMJ as well.

    Just remember that there are a lot of people out there who don’t know, or don’t realize that any sort of bracing is just an assist. There is nothing wrong with your girl or anyone in any sort of brace, developmental issues or not. As long as we keep our positive outlook when interacting with others they may slowly come around…and McKenzie (and any little ones you and she interact with) will be better for it! 🙂

  2. Alyssa Mathis says:

    I can honestly say that the first thing I noticed about Mackenzie was her beautiful blue eye color, and as soon as she smiles that’s all you notice 🙂

  3. Lisa Sexton says:

    Kylie, this was so moving. I really love the little boy’s reaction, comparing the brace to his cast! Thank you for sharing such a sensitive, open look into your life right now. McKenzie is so lucky to have such strong parents who are ready to stretch what is comfortable for them to do what is best for her. She is so loved. I can’t wait to sees some decorations!

  4. Kevin Coates says:

    Our little Mackenzie is the cutest ever — always has been, always will be. Children go through so many things (remember, Kylie, all YOU went through as a little one!), and our job as parents is to support them and love them. Mackenzie feels your love every single day, and her happy smile is proof. You and Mike are wonderful parents. Enjoy every moment of this journey — the ups, the downs, the reality of this amazing love. There is some quote (I can’t remember the source) about having a child being like having your heart go walking around outside of your own body. Ah, the vulnerability!

    Love all of you!

  5. Avani says:

    My niece was a helmet baby. She’s gone from this http://sphotos-b.xx.fbcdn.net/hphotos-prn1/36342_10150215282390386_1764231_n.jpg to this http://sphotos-b.xx.fbcdn.net/hphotos-prn1/r270/548761_10152176848200386_135356455_n.jpg in just 2 short years, and seems to have completely forgotten anything about the helmet (other than the butterflies).

  6. Tamara says:

    K ~ I just got all teary feeling your pain and sadness. We learned that Riley failed her newborn hearing test and I was convinced it was something that I’d done wrong either in utero or during childbirth. I cried at the idea that someday kids in school would laugh at the little girl in hearing aids (even now, I’m starting to cry again just writing this sentence) who talked with a speech impediment. It’s part of being a mom, our hearts are ripped out at even the thought of our children being less than perfect or in physical or emotional pain.

    We are blessed that this loss appears to be very very minor and in one ear only, and coupled with early intervention speech therapy she’s as perfect as she ever was. You too are blessed, as it was caught so early. My best friend’s son wore a helmet for almost a year. During that time, and today as a healthy 6yr old, he remained a beautiful and sweet little boy, just like Mackenzie.

    From 3,000mi away across blogs and Facebook, it’s obvious that you two are amazing and loving parents. She is healthy and happy and thriving. I love the little boy’s cast analogy, children distill things to the essence. All will be well. Big hugs to you, Mike and Mackenzie!

  7. Rebecca says:

    First of all, congratulations on your beautiful baby girl. Isn’t Mommyhood just amazing? It must be tough to have to go through this, but thank goodness she is still a beautiful, healthy baby girl. And in a few short months, this will just be a momentarily blip in your memory. Time sure flies by so quickly with these little ones, all we can do is just enjoy every single minute. And, that pumpkin photo is adorable!

Leave a Reply