Part One: Plagiocephaly Journey, Before the Helmet 

When our little munchkin was about two months old I noticed something strange. Every single photo I took she always looked the same way.

One week old


Two weeks old

Two weeks old


One month old

One month old


Halloween

Halloween

When we went to our two month doctor’s appointment, I mentioned it to our pediatrician. She said Madison had torticollis from being positioned oddly in the womb. Because of this, she was starting to develop a flat head on the side she preferred. Our doctor referred us to a physical therapist to give us some assistance with her neck.

I went to PT with the munchkin and we started doing her neck exercises 2-3 times a day. It definitely helped her to turn her head both ways, but she still preferred to sleep on the same side every night. I’d reposition her, but the little stinker would just turn her neck the moment I left the room. This had started to cause me a lot of stress. I didn’t want our baby girl to grow up with a weird shaped head. I also didn’t have a lot of people around me who thought there was a problem. I’m not a ‘see if it fixes itself’ sort of person. I wanted to do whatever I could to help, knowing that after about a year there’s nothing we can do for her.

I started researching what was wrong with her skull and found plagiocephaly. Flat head syndrome. Specifically, plagiocephaly is when one side of the skull is flat. The pictures I found online described Maddie perfectly.

Madison's plagiocephaly

Madison’s plagiocephaly

Three months after birth I set up a special appointment with her doctor. I knew her head was flat on one side and it was causing her ears to be misaligned and one side of her face to be ever so slightly more prominent than the other. I had Madison up on the table when the doctor walked in and she immediately said ‘yep, she’s got a flat head’ and referred us to a specialist in Wichita. I immediately felt relief and guilt. I felt like it was my fault for not trying harder to have her sleep on the other side. My husband did a wonderful job of reassuring me that I had tried as hard as I could to help, but that there was nothing else I could do.

We waited three weeks and went to see the specialist. They performed a series of measurements on Maddie’s head. She was a champ about it. No fussing whatsoever. After the measurements they said that while her head was the correct ratio front-to-back and side-to-side, it was very far off from right front to left back and left front to right back. So far off, in fact, that even a plagiocephaly helmet would never fully correct her head, but it would make it drastically less noticeable. To keep us from needing to buy two helmets, which of course are considered cosmetic and, therefore, not covered by insurance, they said they do not put infants under five months in a helmet. They gave us handouts detailing her head shape numbers and sent us home.

Head shape detail


Head shape detail

So, right now we’re waiting. In another week we’ll be back for Madison to be fitted for a helmet. Then two weeks later back again to get the actual helmet. Then every three weeks back for adjustments. Keep in mind every time we go to the specialist it’s a two and a half hour drive because we live in southwestern Kansas.

Do I regret doing this? Not one bit.

I know this will be an expensive journey with long drives, tears, and frustrations on both my part and Maddie’s parts. But, our society does (sadly) judge on looks and I want to make sure my baby isn’t held back because I didn’t want to spend money on fixing her head when she was little. Someday I’m sure we’ll look back on this and laugh. Until then, keep us in your prayers.

Have you or someone you know dealt with plagiocephaly?

4 thoughts on “Part One: Plagiocephaly Journey, Before the Helmet 

  1. Pingback: Part Two: Plagiocephaly Journey, The fitting – Carol's Catalog

  2. Pingback: Part Three: Plagiocephaly journey, the helmet – Carol's Catalog

  3. Pingback: First Follow-Up Appointment – Carol's Catalog

  4. I’m glad it’s something that they’re able to help correct without the need for more invasive treatment. Sounds like you guys are getting great care. 🙂
    My youngest daughter was literally stuck in one position during the entire third trimester, and even in labor and birth (well, c-section because she would not budge). Afterward, we had multiple checks for hip issues and then even x-rays, but everything was clear. I was anxious for answers because in utero positions are no joke!

    Like

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