By: Sturdy Mom Central
It’s funny how until something affects you, you don’t even begin to become passionate about it. Before my son was diagnosed with plagiocephaly and torticollis, I had zero idea of what those terms meant. Now, I want to share my first-hand knowledge. Insurance companies are starting to get on board with coverage, but some–like ours–still believe it’s purely a cosmetic issue and won’t cover the expensive cranial banding device. With the Back to Sleep campaign being so popular, nearly 47% of babies have some form of plagiocephaly. If not treated, there could be future issues with jaw alignment, glasses and bike helmets not fitting properly, and possibly even some developmental delays. As a mom with a son with plagiocephaly, I feel it is my duty to bring awareness about this condition.
My son has had trouble with the shape of his head since birth. Unfortunately, he came out with an extremely cone-shaped head. While it resolved itself a little since birth, he also favored laying on his right side for naps. These two together, caused him to get plagiocephaly. For those of you not familiar with plagiocephaly, it is a condition in which a child gets flat spot on the side or back of the head. For many kids, a small flat spot is not a problem, as this can be purely cosmetic; however, if it is not fixed and it is severe enough, it can cause issues later in life.
We were made aware of my son’s flat spot at his two month old, well-check appointment. The doctor didn’t seem too concerned. He suggested switching sides when feeding and making sure he would lay on his left side, instead. We were VERY vigilant to reposition him whenever he would lay on his right side. I would lay awake at night just to make sure he didn’t move his head back to the right. Unfortunately, this repositioning didn’t help a whole lot. At his four month old, well-check appointment, we were referred to physical therapy for torticollis and his plagiocephaly. (Torticollis is a condition which causes tight neck muscles on one side that contributes to plagiocephaly.) I was skeptical of the referral, since I didn’t think my son’s head was all that bad. I was wrong.
We began physical therapy two days after his referral, and I was very glad we did. My son’s plagiocephaly measurements came back for severe. Part of me believed it had improved so much from before, that I thought it would just resolve on its own. The other part of me really didn’t want to see my poor little guy in a baby helmet (also referred to as a cranial band) to fix his head.
By the second physical therapy appointment, we saw improvements in his neck tightness and head movements. However, this alone would not fix his plagiocephaly. We decided that we would go to Cranial Technologies for a free consultation to see if he was a candidate for the Doc Band. Cranial Technologies is a clinic that specializes only in the Doc Band, a helmet made especially to help fix plagiocephaly in babies. This band is worn 23 hours a day for an average of 8-12 weeks depending on the age of treatment. Four to five months old is an ideal age for starting treatment. Anytime after that, the skull sutures start to close making it more difficult for treatment to work.
Unfortunately, the closest Cranial Technologies was an hour and 20 minutes away from our home. This made winter travel a bit dicey, but we stuck with our decision. When we arrived for the first real appointment, my son had images of his head taken. We then reviewed them with a pediatric physical therapist who, once again, told us that his plagiocephaly was severe. She also said that due to his head shape, he likely suffered from the misshapen coning in utero and not just at birth. Hearing this made me feel like it was somehow my fault, even though I know I couldn’t have done anything to prevent it during pregnancy.
Going into the appointment, we weren’t sure if he would need a Doc Band helmet or not. Some small part of me still thought we may be able to sneak by without it. After our consultation, we decided that he absolutely needed one. As a mom, I once again felt like it was my fault that he was in this position. I felt horrible about it. I had to remind myself that the decision to get the band was what was truly best for him and that otherwise he was a very healthy baby. I knew that the Doc Band wasn’t too invasive, and according to many, he wouldn’t even notice it is was on.
Unfortunately, our insurance did not cover the claim. We are currently working on an appeal. Regardless, he needed the band and our job as parents was to get it for him. To make it a little more fun, we took his band to a local vehicle wrap shop to get decorated. It helped emotionally to see something more vibrant than a plain, white helmet.
While it took me a couple of days with the band on to fully accept his treatment, I am very glad we took the route we did. In the first two days alone, we already noticed improvements. Now, 3 weeks into treatment, my son has made even greater improvements. While it doesn’t bother him, it makes life with a 5.5 month old a little bit tougher. Clothing changes became more challenging and breastfeeding with a helmet sometimes hurts my arm. However, these are only minor speed bumps in our adventure together. While it has been an emotional journey, the end result is worth it.