Monday, June 22, 2015

Please stop asking and read this or use Google.

So you see a baby with a "helmet," and want to know more.

 I cannot speak for every case but I will enlighten you on my daughter's, Joyanna's, case in hopes to bring awareness.

Frequently asked questions:
What is she wearing on her head?
My baby wears a Doc Band. It is a band custom made to fit to her head, with a Styrofoam like substance shaping the inside. It is hard plastic on the outside. Every 7-10 days we visit Cranial Technologies to "shave" some of the inside out to accommodate her growing head. There are other types or brands of head bands and helmets, but Joyanna wears a Doc Band because that is what the company Cranial Technologies uses.

Why is she wearing that?
The scientific term is called Plagiocephaly. You can find this definition on the link which will open a new window. (Play-GEE-oh-seff-ally)

What is plagiocephaly?

Plagiocephaly results when external forces are applied to a baby’s soft skull. A baby’s head can become misshapen from these external pressures, resulting in one or more flat areas of the head. The flatness will often be accompanied by facial asymmetry, ear shifting and forehead sloping or bulging.
There are 3 different types of misshapen heads. As causes of plagiocephaly are combined, it’s not uncommon to see heads that illustrate more than one type of deformity, like babies who have elements of both brachycephaly and plagiocephaly.
plagiobrachybrachy-plagioscapho

                    information taken from http://www.cranialtech.com/

Why does she have to wear it?
Joyanna is being treated by a physical therapist for torticolis (tor-ti-call-iss). It basically means that she has a tight muscle on her right side of her neck that causes her shoulder to raise up, and her head to be tilted. She has what is called a "head tilt." We are working to make her not so tense in that muscle through stretches, massages and exercises. Basically torticolis will cause a baby to prefer using a certain side of their body for different things. This caused her to prefer to turn her head to the left and further flatten the back and back left side of her head. She was also positioned in the womb in such a way that made her have torticolis and began her flat spot in the womb.

Does it bother her?
This is a difficult question to answer. The Plagiocephaly itself probably doesn't bother her, but the affects of it might currently or will definitely in the future bother her.
Think of it like this, when you are watching a movie and you have your head laying on someone's shoulder, eventually your neck hurts and you don't enjoy watching the movie sideways so you adjust. Joyanna would basically be watching the world sideways because this causes her "mid-line" or her eyes to be tilted.

Is it helping?
Yes. I wouldn't put her or myself through this if it didn't help. 

Can you see a difference?
Yes, in fact, just this morning I took her helmet off for a bath and noticed marked improvement. Things we are looking for are eye & ear alignment, rounding of her head in specific areas that were flat, and roundness in one of her cheeks.

How long does she have to wear it?
We wont know until halfway through or basically until she is done.


So now that the FAQs are answered I would like to speak my peace. Stop here if you get offended easily.

My Peace

This post's intent is to explain to my friends and the general public why I get so upset with just about anything regarding my baby's Doc Band.

Yes, I am being a big whiny baby about this, but I'm exhausted.
This is NOT a cosmetic issue. I don't need comfort on the situation by being told that my baby is beautiful even if she has to go through this. I know she's beautiful. Several times people have tried to relate to me on this because their baby has a stork bite like many babies do. Please don't. If all this head band were for was to make Joyanna prettier I wouldn't have put us through this. It is not a birthmark, it is a physical necessity.
After the countless questions and comments, angry naps and tears, I will no longer be answering ANY questions and instead will refer any and all people to this blog. My child's medical needs are no ones business but I have discovered as of late that evidently God intended for me to educate the general public and bring awareness to this situation.

I know that most people do not have ill intentions when it comes to my baby's Doc Band, however the good intentions wear me down as well.
I do not want to talk about this constantly, but it feels like everyone and their aunt wants to use it as small talk.

Please stop.

For my sake and the sake of any other mother who has to go through this, do not ask questions. Most people assume that it is okay for them to ask because I know they are sincere and really want to know. No. You and everyone in the grocery story assumes this and it is false. I don't want to talk about it so please stop asking. There is a very short list of people who I will allow to bring up the issue without being upset, Joyanna's doctors, her physical therapist, and my husband. If my own mother doesn't get a break to be added to this list than neither do you... But yes, I will talk to my family about it because I bring it up to update them on her progress.

Joking about the helmet is also unacceptable. It is not to protect her head from bumping against things, it is not for playing sports or riding a bike.

Comforting a mother by telling her she's a good mother, but Susie Q's baby has to wear a helmet because she's a lazy good for nothing whatever and let her lay down on her head too much is not comforting at all. What that tells me is that strangers passing by assume that I'm Susie Q. I am not Susie Q and more likely than not, Susie Q isn't as lazy as you assume. This happens to babies a lot, and lots of parents choose to let it go untreated. If you ask me, leaving it untreated seems pretty wrong. If a baby is wearing a helmet, you can assume that the parents of that baby are taking the best care possible of that baby. If a baby doesn't need a helmet, that is awesome, I wish I were in that situation. But if a baby is wearing a helmet, it is most likely that they are paying upwards of 2 grand out of pocket to treat their baby.

It hurts so much because I don't get to hold her the way I'd like, or kiss her head as much as I'd like, and that is reason enough to be hurt. 

The next time you see a baby with a helmet, please treat that baby and the parents as if there is no helmet at all. At least that is how I would like to be treated.

If I lose "friends" because of this post, that's unfortunate. I have to speak up for myself and for my baby girl who doesn't not have the ability to do so.

Thank you.

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