Monday, November 9, 2015

Plagiocephaly & Brachycephaly (Positional Flat Head Syndrome)

Two words I had heard of during my extensive (read: neurotic) research while pregnant. I read about all the new cases of Plagiocephaly since the 1990s Back to Sleep campaign. I purchased the snuzzler. I purchased the head pillow. I was bound and determined that I wasn't going to be *that* mom after reading so many hurtful comments from close circles of friends about "being a lazy mom" if your child had to wear a helmet, assuming that you never picked your child up. This was not me. In fact, I was quite the opposite and friends/family might say that I was (am) a baby hog. I never let my child down- he was always on my hip. You see, the truth of the matter is that he is and always has been an incredible sleeper. Currently, he sleeps 12-13.5 hours a night (I KNOW, CRAZY!). On top of this, he usually gets in a few hours of napping in a day as well.

It was around his 3 month visit to the pediatrician when the Dr. mentioned Waylon's head being slightly flattened in the back. I was floored, and obviously blind, because I never even saw it (nor did my husband). I don't know whether it was because we were so used to him looking the way he did or if we were in denial but we truthfully had no clue there was even an issue. It wasn't until I did a search for google images and literally saw a child diagnosed with plagiocephaly that looked EXACTLY like my son. And I don't mean just the way his head looked but his face & everything. The left image is the Googled image and the right is me holding Waylon at 3 months. 

I left the pediatrician feeling overwhelmingly confused. He told me that yes, it was slightly flatter on the back than what he would like but to try re-positioning first and we will check in around the 6 month appointment to see if he will potentially need to have helmet therapy (as a side note, our DS does not have Torticolis). So we went home with a mission and I tried everything. I got rid of the bouncer seat (which he loved to sit in). When he was up, he was not to be leaning against his head at all. I purchased a bumbo seat. I re-positioned him on his side when taking naps (which he would quickly squirm out of and onto his back). I held him until my arms were about to give out. I tried everything. 

Enter month 4.5. Things were looking the same if not worse. I called the pediatrician and scheduled to come in for a second look and potentially referral out to a cranial remolding specialist, which I still had a little bit of hope thinking he would say "it will eventually work itself out". We went, and they referred us to Children's Healthcare of Atlanta to get a StarBand scan of his head. It took awhile before we could get in, so it wasn't until Waylon was 5 months that we were getting this consultation. Low and behold, the specialist mentioned he has Brachycephaly at a ratio of 102%. In other words, Waylon's head was now wider than it was long. I learned that typically they like to see a ratio between 80%-90% so Waylon was in the "severe" category and would need to go through helmet therapy for around 4 to 5 months, wearing the helmet 23 hours a day.

My heart was broken for Waylon. I knew the stigma behind helmet wearing and just the thought of people staring at him strangely made me sick. I didn't want him to feel those negative vibes and I didn't want him to be uncomfortable wearing a helmet for 23 hours a day. We went home, talked to family & prayed about what we were going to do. I have to admit, I was super skeptical. I read articles that said helmet therapy really didn't work and all I could think about was putting my son through this treatment for nothing. I also thought, what if this was his/our only chance and we ended up turning our backs to it. The orthotist at CHOA mentioned if we didn't do anything about it Waylon may not be able to wear helmets for sports like "normal" kids. I couldn't imagine having the conversation with my son about why he couldn't play baseball or football (if he wanted to) with the rest of his friends. 

It turns out that regret had we not done everything in our power to help Waylon and give him the best we could outweighed our anxiety and hesitations about the treatment. We decided to move forward.

Right now, we are on week 5 of helmet therapy and so far so good. The first week was absolute hell. Waylon hated having it on and he immediately started sweating when we put it on his head. The break-in period is supposed to take about 4-5 days of incremental wear until you get to the 23 hours/day and for us it took about a week. We didn't feel comfortable "forcing it" so we let it happen in its own time and soon enough Waylon was fine with it on. You have to clean it every day so it doesn't end up smelling like a boys locker room but it soon became part of the "normal" routine. Waylon gets to take off his helmet for an hour (sometimes longer) each night for bath time while we clean the helmet. I do have to say that every time we take it off he tries pulling his hair out and then immediately becomes energized as if a literal (and figurative) weight has been lifted off of him. 

People will stare. Pre-helmet therapy Waylon was a magnet for people to come up and comment on how adorable he was. We couldn't go anywhere without him getting showered with lovely comments. The first couple weeks of going to "our usual spots" were bizarre. I felt like we didn't exist- like people were purposely trying to not make eye contact. I was furious. I felt horrible for Waylon. And then I got over it. Someone very wise and very close to me had the best advice:

"Stay positive. Stay happy. Waylon will feed off of your emotions. He is going to sense when something is right or something is wrong". 

It was brilliant. And it is something I want to pass on to you, if you are reading this post and happen to be going through this as well. The situation sucks, plain and simple. But it doesn't have to. Move on quickly because let's face it, we are all doing our best here. Sometimes you are dealt difficult cards but keep that poker face on for the sake of your child. Be their light.

So, what are our results so far? Truthfully, we can see a slight difference in just 5 weeks. I still find myself looking for reasons to "free" Waylon and sometimes end up leaving his helmet off for 3 hours in the evening, versus 1 :) I'll be sure to update with results when we go for a second scan next week (his 6 week scan). Fingers crossed!

         Progress at 5 Weeks                  Happy Boy w/his new Magic Hat


  1. Hello, my daughter’s head looks exactly like your son’s. Since she was one month i noticed the shape is not good. I tried repositioning for 3 months and i don’t see any improvement :( Did the helmet work? How does his head looks now?