Wednesday, August 10, 2016

Our Journey with Positional Plagiocephaly

Now that our journey with Avery's positional plagiocephaly has passed, and I wanted to take a minute and write down our experience with wearing a helmet and my thoughts overall on the process. Positional Plagiocephaly is the long medical term for when a baby has a flat area or asymmetrical head. I've had several friends with babies message me or talk to me about their concerns about their baby's head and what happened with Avery- so if this can help anyone out there, then I'm all for it.



I guess Avery's story begins at birth when it comes to the shape of her head. She was delivered with the assistance of a vacuum, and from the get go she had an odd shaped head. Her left side protruded more and wasn't as round as her right side. If you know anything about positional plagiocephaly, then you know that doctors will tell you its from laying your baby on the same side or back of their head for prolonged periods causing a flat spot. And while that may be true, I am just not convinced that its the sole reason that Avery had a flat spot. Her head was oddly shaped from day one, and I feel like no matter how much tummy time I did or time spent off the back of her head, it just didn't correct itself.

Another thing that I think may have contributed is the fact that she slept in her swing in our room for three months. Landon was in his crib at four weeks old, and when he slept he turned his head to the side. Avery slept in her swing and was on the back of her head all night long. During the day, I followed the tummy time guidelines and held her in her Solly wrap a lot to try and keep her off the back of her head. It just wouldn't correct itself.

Avery's flat spot was directly on the back, her head was wider at the back than the front. After monitoring it and seeing if it would correct itself for four months, our pediatrician referred us to a plastic surgeon at Brenner Children's Hospital to have her head evaluated for positional plagiocephaly. We met with the plastic surgeon, did some scans on her head, and it was advised that Avery wear a cranial prosthesis, or helmet, to help correct her flat area.

Let's be honest, no one wants their child to be anything less than perfect. No one wants them to have to wear glasses, or braces, or anything else cosmetic that may draw attention to them. No one wants their baby to be sick or in the hospital. I know that wearing a helmet is not the end of the world, and I also know that if this is the worse we face with Avery we are incredibly lucky, but that doesn't mean I wasn't disappointed when we found out that she needed a helmet. I took it personally, that I didn't do my job at home to prevent or correct this quick enough. After all, I was the one at home with her all day and the one who was more responsible for tummy time. I worried about her discomfort and sleeping with the helmet. At the time she was a terrible sleeper and we didn't need this thing to make matters worse for us.

Honestly, the last thing I was concerned about was what other people thought- I couldn't care less if they ask questions or look at her. Helmets are more common now, but you'd be surprised how many people still asked us why she wore it or what was wrong with her. The other thing that made me a little sad that she had to wear this was that I wouldn't be able to snuggle her or kiss her head like I previously had. Now, this big ol helmet was in the way.

We were then referred to an orthotics and prosthetics place that had her helmet customized to her head size and shape. We learned how to care and clean for it and the rules of wearing her helmet. Twenty three hours a day, for three to six months. We knew her plagiocephaly wasn't severe, so we were optimistic that we would be on the three month end of the time frame instead of the six month end. That would put her getting it off in July and we'd have one good month of the summer without worrying about the heat or sweat.

I would say the helmet was definitely more of an adjustment for John and me than it was for Avery. She really didn't seem to mind wearing it, it didn't affect her sleep. She never fussed when we were taking it on and off. We only and one hiccup early on when we went in and she had the beginnings of a small pressure spot on the back of her head, but it cleared up quickly and we never had any issues going forward. I can't stress the importance of cleaning it regularly and making sure its not causing any red spots on your baby's head.


We went to the beach while Avery was still wearing her helmet, and it definitely affected our week simply because she couldn't be on the beach for very long with us. We are a family that goes out right after breakfast and doesn't come back in until it is time for supper. Now, we had to watch the clock to make sure she didn't have it off for too long and take her back inside, bathe her and put it back on. The prosthetic people did tell us not to let it ruin our vacation, that she could leave it off for longer than an hour a day while we were there, but under no circumstances could the helmet be worn on the beach. We didn't want to risk any sand getting inside the helmet and irritating her skin or causing any issues. We left it off for max about three hours during the day, and then took her back inside the house. No, it didn't ruin our vacation- but it was definitely more of an inconvenience.

We were so incredibly excited when we were told that she could stop wearing it after only two months. She had really big growth spurts and showed a ton of progress, which we are so thankful for. Looking back, the two months flew by. Going for check ups every two weeks helps it pass quicker, and if we had to wear it longer we would have just kept on trucking knowing that it was the best thing for Avery. She has tons of summers going forward to swim and be outside, just a few months this summer really isn't much in the grand scheme of things.

I think as a parent, its best to keep it in perspective. Things could be so much worse. She could have a serious health issue versus just a cosmetic one. We consider ourselves blessed that her health is perfect, and now her noggin is too!









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