Recently Hazel’s physical therapist brought a tool used to take measurements on a baby's head to help determine if the misshapenness is normal, mild, moderate or severe. I was not too excited to find out that Hazel's measurements put her in the "severe" category. What prompted her to do the measurements is that she was feeling like Hazel's head shape is not improving as quickly as it was before. (This measuring tool thing is new so we don't have a measurement from when this all started to compare to.) So then last week, Hazel's doctor examined her head and also thought it wasn't improving like we'd hope. So... The doctor referred us to the Plastic and Reconstructive Surgery Department at Children's Mercy in Kansas City, which is where we will get the final answer on whether or not Hazel needs a helmet (or sometimes it's called a band) to fix her head shape.
This all started with Hazel's stiff neck, which is completely fine now. She is getting good head control and has basically full range of motion, which is really the most important thing. The only issue is the shape of her head. A good thing is that from the front her face and eyes are symmetrical, which is unusual. Babies with a better head shape than Hazel's still have at least a slightly skewed face. Basically it’s just the back and one side view that does not look normal, and is the cause for her measurements to fall in the severe range.
It’s really hard to take a good picture with her head bobbing around and without shadows, etc., but here are a couple where I think you can see the abnormalities.
When Nyla had the same neck issue as a baby, as a result of fixing that, her head shape rounded out on its own. We just can’t seem to make that happen with Hazel’s. All the repositioning (so that she is always looking to the left or lying on the left side of her head) is just not making a ton of difference. To me it seems like it's making her head shape lumpier, if anything. There is evidence that we are trying because a bald spot is happening on the left side where we are focusing on positioning her when she is lying down.
Besides keeping her from laying on the right side of her head, the more we can keep her upright in the bumbo or saucer, or laying on her tummy (when awake), the better. There is also evidence that we are doing this because she getting really strong with her head and neck control.
So… Wednesday is our consultation in Kansas City (it'll just be a quick trip). I think they’ll either say to go ahead and proceed with the helmet, or they’ll decide it’s not too bad and that she’s young enough it will still get better on its own, or they'll say that we can give it a another month or 2 and then decide.
So I guess pray for us and wish us luck on Wednesday! :)
5 hours ago