UPDATE (June 2014): It seems that someone on Twitter linked to this post this week. Just to be clear, I am not advocating that parents choose NOT to use helmet therapy; I’m simply sharing our experience of finding out about brachycephaly AFTER it was too late to treat our older daughter. Hugs to all of you–I hope my perspective helps!
If you are one of the 200+ visitors who arrives at my blog each month via a brachycephaly-related search term, this post is for you! I’ve noticed a lot of visitors want to know more about untreated brachycephaly, which is what happened to our older daughter. (Our younger daughter wore a helmet for six months.)
So today’s question is: Do I regret not treating Addie’s brachycephaly?
Addie is a former 26 weeker, who spent 135 days in the NICU. She’s had five surgeries in her five years (four before coming home from the hospital for the first time), and deals with long-term vision loss due to ROP laser treatments in both eyes.
The picture of her (above) was taken on her first birthday (9 months adjusted) and shows how flat her head was at the most extreme point in time. (Kate’s was actually worse.) As a mom that’s now walked the brachycephaly road twice, I wonder why none of her health professionals ever mentioned the flatness until we were past the window of treatment. (Her OT thought she might have torticollis, which was the agreed-upon diagnosis by her ophthalmologist, until the pediatrician cleared her of that and sent us back to ophthalmology where she was given a prescription for glasses. We were also told that helmet therapy is strictly for cosmetic reasons.)
The pictures below show why we were given so much conflicting information (in my opinion). The middle picture doesn’t even show ANY signs of brachycephaly (taken one month prior to the picture above)!
As Addie’s hair grew longer, we became more adept at “hiding” the flat spot underneath cute hairstyles–it really only is evident when her hair is wet now!
Now that Addie is in Kindergarten, I find that her untreated brachycelphaly doesn’t bother me like it used to. Our girl is happy, healthy, and smart, and we did the best we could with the information we had at the time. So, no–I have no regrets. By the time I heard the word brachycephaly for the first time, a helmet likely would have been too late to make much of a difference.
I hope that answered your questions about untreated brachycephaly.
If not, please feel free to leave a comment!