Mom Monday: Meet Navy and Plagiocephaly

Hi i’m Shawntae and I have been asked by many people about Navy and why she wears a helmet. Before she wore hers, I knew nothing about Plagiocephaly and had only seen one baby wear a helmet ever! When I saw that baby, I remember thinking, “I wonder what happened to that poor baby?” So I decided to come here today and talk about Plagiocephaly and help educate others on ways to prevent your baby from getting it or, if he or she already has it, to stop it from progressing more! I also want to update you on Navy and how she is dealing with her “pretty.” I hope I can spread awareness about Plagiocephaly and maybe you can pass this along to other moms that have newborns or moms that are pregnant.

What is Plagiocephaly?

Plagiocephaly is an abnormal-shape head condition that is caused by the constant pressure on one side of the skull. This condition can be detected immediately after birth and, even though the head of your newborn can have a normal and symmetric appearance at birth, this condition can develop during the first months of life.

Did you know Plagiocephaly (flat-head syndrome) is more common than we think it is? This is happening a lot now because babies have to sleep on their backs, which puts a lot of pressure on their skulls. The positive outlook on this is that the SIDS rate has gone down while the Plagiocephaly rate has gone way up! Please make sure you change your babies’ positions when they sleep or nap. You will start to notice if your baby favors one side over the other, so make sure you change it once you start to notice. If you do not, your child will probably start to get a flat spot on that side and the plagiocphaly will begin its course.

Things that can help keeping your baby off their back and head: Baby wearing and tummy time! Please don’t be afraid to ask your doctor if you think your baby has a misshapen head! Luckily my doctor caught it. Some doctors will tell you, “They may outgrow it!” In most cases, they don’t, so do not be afraid to get a second opinion or look into therapy or a helmet!

This is what Plagiocephaly looks like and a great example of how Miss Navy’s head was! Her ear will probably never be the same again but that’s fine, our differences make us who we are:

Navy was diagnosed with Plagiocpehaly at two months old. After many doctor’s appointments, we discovered Navy was born with Plagiocphealy because she was positioned weirdly in utero so when she came out she already had a flat spot on her head. At first I felt horrible that I did not notice it. Still to this day I wonder whether, if someone had told me in the hospital that she had a flat spot and educated me about Plagiocephaly, maybe I could have prevented it from getting worse. I don’t know, but I’m so glad we have such an amazing pediatrician who caught it early. Everyone we have worked with has been so great.

After we learned that Navy had Plagiocephaly and that therapy would not help, we were told she would be put into a Starlite Band (Helmet), a.k.a cranial orthosis. These helmets are what helps make the head round again. So when you see a baby out and about with a helmet, he or she has  Plagiocephaly and is doing cranial orthosis to correct it! 🙂

I also want to just say that no one has a perfect head shape. The helmet in no way, shape, or form will make her head perfect, but it is helping. If I did not get Navy a helmet and her soft spot grew in, her head shape could cause informality, learning problems, and the list goes on! She is also a girl and I think she would have been very, very upset down the road if we did not do this for her.

I have also had people tell me that it doesn’t matter and I shouldn’t have gotten one for her because no one has a perfect head. Well, if you see from the picture above, that is NOT what a normal person’s head looks like! Also, she is my child and at the end of the day I know more than you and so does her doctor. Therapy may have worked for your family member or your child, but it did not work for my child and rarely works for a lot of babies all over the US. It is so sad when you see a child that could have benefited from cranial orthosis or a child who does have Plagiocephaly and the mother does not know it!

Navy’s helmet was fitted to her head, then had little voids (spaces) in it where the helmet would help her head into that direction, making her head round again. She would wear it for 23 hours a day, through sleep, playing, etc. Then the one hour she could have it off would be for cleaning, bathing, eating, etc.

We FINALLY received Navy’s helmet when she turned four months old, after the insurance cleared it for us. Some insurances do not cover cranial orthosis, which is a shame and is so so sad!

At first she HATED her helmet. The first week was really rough. I just had to remember that she would thank me later and I couldn’t wait to see her progression. After that week, we had already seen a pretty good difference. Her head had already grown a lot. It does get stinky, but we clean it and it helps a lot with the stinkiness. After that first week, she does not mind it at all. It has become a part of her and she doesn’t even think about it or try to pull at it anymore.

Do people look at us different?

Yes and No.

I have had really good, positive feedback with the public and some negative. A lot of people tell me how cute she is, or tell me they know someone who has had one, etc. I was approached by a woman who gave me a big hug and told me that her son wore one and look at how perfect his head was! She kept telling me that our kids will thank us for this! Some people come up to me and look very concerned, asking what on earth happened? It’s very sweet when people do that. I have heard people say to their kids when they ask them why the baby has a helmet on that she is handicapped and that is what hurts because they are so uneducated about why she is wearing it and she is not handicapped. I hate how people throw that word around when it is not needed. I have had a couple of jerks say rude things to me, but I’ve learned to just brush it off!

Navy will wear her helmet for 3-6 months. We are one month down and counting down the weeks where she can graduate from her pretty! I can’t wait to see that cute round head of hers and can’t wait to put headbands back on her too.

If any of you ever have questions about her helmet, please do not hesitate to ask! If you know someone who has a baby that may have Plagiocephaly, feel free to have them email me.  Do not be afraid if your child has Plagiocephaly; it can be treated and it does get better! Do not be afraid to get a second opinion and do not let any doctor tell you your child will outgrow it! Because usually, babies do not and will not.

This journey has been hard, but it will be–and has been–very rewarding.

UPDATE: Navy is now fully graduated from her helmet and her head looks beautiful! We are so glad this part of our life is over, but we are so grateful for what her helmet has done for her and us!

Shawntae has her own blog that you can read here

a little king and i

No Comments

  1. Veronica -  August 6, 2012 - 9:29 am

    My little niece was similarly diagnosed and my sister brought me up to speed on this issue. It is good to see someone else getting the word out there too. I hope all goes well for Navy!

  2. Heather P. -  August 6, 2012 - 10:55 am

    What a beautiful baby girl you have! Thank you for educating us! It’s sad how people just assume instead of asking or looking it up themselves.

  3. Katrina -  August 6, 2012 - 4:22 pm

    She is gorgeous! Both with or without the helmet 🙂 xox

  4. Debbie -  August 7, 2012 - 12:17 pm

    Thanks for sharing! I know someone with a baby with similar condition. Can u tell what is the effects if untreated? Besides an odd shape?

  5. Julia -  August 10, 2012 - 2:43 pm

    I really like that you are spreading awareness… But some of the things you said in the article really urked me.

    The first one was how much it bothers you that there are some kids who’s parents dont notice that their head is misshapen and didn’t get it fixed, and the way you indicated that you feel bad for them.

    I find this kind of awful to say, for a few reasons.

    1. Perhaps they did notice, but they decided that it was a unique part of their little one, and they chose not to have them wear a helmet.
    2. Perhaps they were hospitalized and unable to go through helmet therapy for that reason (like my son).
    3. Perhaps no one in their family really notices or cares, and you are only judging their ‘non-perfect’ head from your new standards of head shaping.

    The other thing that really upset me, rather than urked me…

    That people would ask that she was handicapped… and it upset you that people would just throw that around.

    This literally infuriated me to the point of boiling.

    People are NOT judging people asking if they are handicapped. There are thousands of handicapped people in one way or another, and there is NOTHING wrong with having a handicap. The fact that you feel like it was an insult shows so much about your perspective of ‘perfection’ and your lack of knowledge in that area.

    My son has Downs Syndrome and will soon have a helmet if he can get out of the CICU in time…

    And for you to act like having someone assume that your daughter had a handicap was so disturbing and insulting…

    I honestly hope you are just naive and don’t realize the way you sound… because that was what made me go from thinking your article was helpful to realizing that you have very little life experience to be so offended by such a harmless question.

    I am completely in understanding at the reasons for using a helmet, and I think that it is great that you were able do do that for your child.

    However, your article was insulting to parents who choose not to get a helmet for their little ones, or are unable to, and to parents with children with special needs.

    There is a way to spread awareness- but I was not impressed with the way you did it in your article.

    It is not an insult to be asked if your child has a handicap when they are wearing a medical device (which is what a helmet is). That is actually a great way to start a conversation and inform them about the need for helmets- so the next time they meet someone with one they will know why a helmet can be needed.

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