“Mr. Quintin, why is Avery’s head oval-shaped?” Maddie’s friend was taking a break from their play-date to get a drink of water as I was placing Avie back into her swing after feeding her. Partially to discourage further such questions, but also to answer her honestly, I included in my explanation words like calcified and hemorrhage and plagiocephaly. “Oh, I see. Can I please have some popcorn?” My plan worked.

Plagiocephaly-“a malformation of the head marked by an oblique slant to the main axis of the skull.” However, more recently, the term has been applied to any condition characterized by a persistent flatten spot on the back or side of the head. There were many factors that contributed to Avery’s case of plagiocephaly. Among them were her premature birth, her early brain hemorrhage (and subsequent surgeries to relieve the pressure exerted from the hydocephalus), and the fact that from very early on her head was placed such that she faced to the right. Due to these external factors, her skull began to harden with the right side being very flat. See, I wasn’t lying to Maddie’s friend.

We recently took Avie to Cranial Technologies, a clinic that treats this condition by way of a helmet called a DOC Band. When used early enough these helmets can usually provide a dramatic improvement in the shape of a baby’s skull.

The miracle of Avie being with us was enough for us to both say that we did not really care about the shape of her head. But then we considered what she will likely say in ten years, (or less) when her self-esteem is based largely on her appearance. So we decided that we would take her in for a consultation. Unfortunately, there are some complications with treating our baby. As of right now she doesn’t have enough strength to hold her head up for long so the addition of six more ounces would decrease her level of head control. And then there’s the issue of her shunt. If it were to become constricted then the results would almost definitely lead to her being hospitalized for another surgery. So the treatment of her plagiocephaly will depend on how long it takes her to build up enough strength to hold her head upright. The good news is that babies can be treated up to eighteen months and her adjusted age will be factored into her potential treatment. The bad news is that with the need for a very custom helmet to be made to accommodate her shunt, our price will likely increase dramatically. And with each day that passes the success of the treatment decreases. 

Perspective. Eight months ago we were worried about her mere survival. While we are still concerned about her current health, we are also able to now focus on her future appearance.

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7 Responses to Plagiocephaly

  1. Tammy Tanner says:

    I am so glad that Avery is doing well…I have thought about her often and check this blog on a regular basis for updates on her…

    Thank you for updating and I will continue to keep all of you in my thoughts and prayers.

  2. Tracy (Craig) Ronan says:

    Keeping you in my thoughts and prayers. My cousin’s son had a severe case of plagio and wore a DOC band for 18 months. My son had craniosynostosis. This is when one of the sutures in the skull fuses before birth. His head looked like a football until we had surgery to remove part of his skull. He wore a helmet (not the DOC) for about 3 months. If you get a helmet and insurance denies you, fight fight fight them! We had a fairly easy fight thankfully, but others do not. I will keep your family in my prayers. So glad she is doing well otherwise 🙂

  3. Stephanie says:

    Considering the warrior your daughter is, I think she is beautiful just the way she is! Thank you for updating Avery’s blog!


  4. yvonne says:

    I found your blog through the micro preemie group you joined. Thank you for your last post. We just started taking our 15 month-old preemies out more. The boys were 24 weekers and face many typical preemie issues. Aside from the usual questions, “are they walking yet?” (one isn’t even crawling) we get lots of questions about Sam’s glasses. A little girl asked why he wore them today. I told her that he needed them to see better. She then asked “why?” Remembering your post, I simply answered, “he’s severely nearsighted” with a smile. The little girl said, oh, and went off to play. Thanks again for your post!

  5. Nicole Malachowski says:

    I love you guys! Avery has been blessed with the finest parents in the world. Stay true to your heart in caring for her, and the path will continue to unfold in front of you. Hugs to beautiful Avery!

  6. Danielle says:

    I like Nicoles suggestion, “follow your heart and the path will unfold in front of you”. This is one of my personal challenges as we travel down your road. The unknown and the every day stress of trying to even out the plagiocephaly. Just know you are not alone, and with each day that passes we will get stronger in our walk….our prayers are forever with your family.

  7. The helmet is a great treatment for plagiocephaly. It has proven to be the most effective, and would certainly recommend the treatment if people had doubts on how effective it truly is.

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