This is about to get pretty personal. But I feel compelled to share our journey in order to raise awareness about this little known condition.
Jackson was born just like his Momma. With a love for sleep. When he was itty bitty I felt that I had found reprieve at last. A baby that loved to sleep and a Momma on number three. We were the best of combinations. Around two months we went to his checkup and the doctor asked all about his new little life. I asked him if it was normal to have a baby that slept so many hours a day. He agreed that it was perfectly normal and asked me what position he was sleeping in. I told him proudly that he was a back sleeper. The doctor smiled and said Back to Sleep….perfect. **
We went on our way. Jackson continued to sleep day after day on his back. Then one day, I noticed his head felt a little different. There was a little tiny flat spot. At first I didnt think anything of it. You couldnt even see it behind all that beautiful hair. A few weeks went by and I noticed it was getting bigger. So this time I made note to ask the doctor at our next appointment. When I asked, he shrugged and said how normal it was these days. Just give him some extra tummy time and it will work itself out. Not to worry.
So I didnt. Tummy time was the staple of our day, every day. Just what the Doctor ordered. There was only one problem, the flattening was getting worse and worse. Then Jackson started to loose that glorious hair and it only magnified the problem. My intuition was now starting to change. So I made another appointment.
This time the doctor bounced in and said “Oh he has Plagiocephaly. Very common due to the Back to Sleep campaign to prevent SIDS”. At first I felt relief with his bouncy tone. I started to probe with questions. I asked him what to expect. He said it may round out a little but that there was nothing more than tummy time that we could do. My mouth must have hit the floor because next he said “so he will have a flat head when he grows up, not a big deal”. I felt like I could throw up right there. Right on his feet. What he truly meant I believe, is not to worry about brain damage, or slow learning, that his brain will be okay. But it certainly did not feel that way to me at the time. (Of course we were absolutley relieved that it wouldnt effect his learning or brain function, that is a given). But the thought of my little boy having a flat head for the rest of his life. A little boy that was born with a perfectly normal shaped head having to endure teasing or other bad things Mom’s can dream up. All because.
And this is the important part. ALL BECAUSE I didnt turn his little head when I laid him down. He slept looking straight up every time. ALL BECAUSE I didnt know to do so. ALL BECAUSE there is no information out there. ALL BECAUSE by the time I got the information it was too late. BACK TO SLEEP and TURN BACK AND FORTH. Maybe is a better slogan. Just a simple turn would have done the trick.
There are several different forms of plagiocephaly. This is postional plagiocephaly. It happens when babies favor a certain postion. As soon as you notice your baby starting to do so – it can be one side of the head or on the back like Jackson. You should start to encourage change. There is information on the web and search until you find a doctor that will help show you how to do so. There are some out there. We finally found one.
At the next appointment we met with a new Doctor. He had experience in dealing with children with plagiocephaly and gave us our options. We could: A. let nature take its course. It could in fact fix itself but there were no guarantees or B. Get a helmet. That brough on a whole second stage of feelings. Anxiety over my baby having to wear a helmet. Not to mention the cost (about 4K).
My husband and I bounced wildly from side to side. Helmet or No Helmet. Our thoughts were if we wanted to ‘subject’ Jackson to wearing a helmet 23 hours a day for something that could fix itself. What if we didnt get the helmet and it didnt fix itself (there is a very small window of time to fix it – typically before 13 months). The money – the vacations we may need to skip…would it take away from the other kids. It was two weeks of non-stop incessive thinking for me. I would go from one extreme to the next. Then I would look at my little Jackson and weep. Wishing I could turn back the clock and know what I now knew to prevent it in the first place. The whole thing left me sick to my stomach. We asked family and friends that lived close for their opinions. And finally we all came to the consensus that if we have the chance to fix it, we should.
So we are. We go for our appointment with a specialist on Wednesday. They will do a digital scan to create a blueprint for his helmet. Then in a week or two he will be sporting the oh SO cute helmet. Said to be completely comfortable. I plan to continue this story with you. To raise awareness. To shine light on a VERY preventable condition (in most situations).
For now. The before pictures.
From the front a very sweet smile.
From the back: My sweet baby.
** You may have seen these astericks above. Well loooking back, this was the perfect time to have been educated. To have learned that sleeping all those hours was okay and back to sleep is perfect. BUT change the position of his little head each time you lay him down. Simple I know. But that would have made the paragraphs that followed obsolete. Let us share the information and make this condition obsolete. That is my wish.
Lastly, I should add that the sleeping position was key for Jackson. There are other factors to consider if you are starting to see a flat spot. Time spent in car seats with a hard surface, strollers, etc. Limiting the amount of time spent on the back of the head in any situation is advisable. For most babies simply repositiong and limiting exposure to time on the back of the head is enough to correct the condition without further treatment. We did this with extreme measure. Using a bumbo seat inside his stroller so he would never have his head touching the back of the stroller. Baby wearing him EVERYWHERE. Waking up multiple times a night to reposition his head. Limiting the amount of outings so that he would only be in the car seat X amount of time. Unfortunately all too late for Jackson’s case. But if this type of action is taken right when you start to see a flat spot, typically around 2 to 3 months of age, preventable. Yes, completely.
Finally, thank you for coming along on our journey. I have jumped off of the guilt train. I refuse to ride it any longer. I instead feel that we are meant to share our story. To help others with what we have learned. After all, that my friends, is what life is all about.