My baby has a cranial remolding helmet. He officially got it the day before Thanksgiving and now we have two weeks left until he can get it off! Today, I’m finally sharing our journey in hopes that other potential helmet families will find it and maybe find some comfort and resources in this post.
If I’m being honest, this post has taken me a while to write. I originally intended to share our experience when Ben received the helmet, but every time I sat down to write I got overwhelmed. It hasn’t been a terrible journey. Ben is such a good sport and just goes with the flow. We also love our Orthotics and Prosthetics specialist and our Physical Therapist. They have been such incredible teammates through this process. It’s not even the mom-guilt that overwhelms me (I’ll get to this in a second.)
I get overwhelmed because I’m sad.
I feel so sad that my beautiful boy has to go through any kind of pain or discomfort. As his mom, it’s in my nature to want to make everything better for him. Easier. The thought of him being even a little bit uncomfortable just breaks my heart. The fact that he has been in this helmet for 23 hours a day, 7 days a week for 3 months just stings a little every time I think about it.
He has been incredibly brave. He doesn’t let the helmet slow him down or affect his mood. However, I know it itches because I watch him figure out how to hold the helmet steady so he can move his head around inside. I know he is hot because every day when we take it off, he has a sweaty, stinky head. I also know that it’s heavy. I know how much he weighs with it on vs. with it off and I watch him just kind of collapse when it’s too much.
He plays in the helmet, he eats in the helmet, he sleeps in the helmet. It’s has been his normal for three months and that thought overwhelms me and makes me sad. I just want wonderful things for my baby. I know life isn’t always wonderful and this is the first of many things he will have to endure in his lifetime, but he’s a baby, so I just feel the sadness.
With that said, there is a light at the end of the tunnel! He has his final head scan in two weeks and we will be out of the helmet! So today, I finally feel a little lighter and was able to finish this post. I want to share a little bit about our journey so that current and future helmet families might be able to use this post as a resource. I also want you to know that you are not alone and any feelings you have about the situation are valid.
Also, I want you to know you are a good parent. If you are reading this and wondering if you are doing the right thing, you are making the right choices for your baby and you are a good parent.
Ok, let’s do it.
Why We Have a Helmet
I have a full post on Ben’s birth story, but the short version is that Ben was a surprise c-section baby. When I was eleven years old, I had to have an emergency appendectomy. The surgery left a lot of scar tissue that I didn’t know about until we were in the c-section surgery. Unfortunately, Ben got stuck on the scar tissue and couldn’t drop.
I was induced and on Pitocin for 20 hours. That entire time Ben was pressed against the scar tissue and so he had a small hematoma on his head when he was born. Totally fine, we had two ultrasounds on his head at the hospital to make sure everything was fine, but it did leave a little bump on the back right side of his head.
Because he was pressed against the scar tissue for so long, he also has torticollis which is the twisting of the neck that causes the head to rotate and tilt at an odd angle. So basically if you look straight at Ben he leans a little to the right rather than looking at you straight on.
Finally, he is a good sleeper. Safe sleep means babies sleep on their backs. Good sleepers like Ben spend a lot of time on their back and that will flatten out the back of their heads. With the torticollis and the hematoma bump, Ben slept with the back-left side of his head pressed against the mattress and developed a flat spot in that area.
ALL of these things combined led us to physical therapy and then ultimately the helmet. Our specialist says big babies who are good sleepers with torticollis are the main recipients of a helmet. That definition is Ben in a nutshell.
What Treatment Has Looked Like
We knew Ben had a tight neck since his first pediatrician appointment. We knew it was something we needed to keep an eye on and monitor. We were doing stretches recommended by our pediatrician and we got it checked by our doctor at all of our wellness check-ups.
At his 6-month appointment, we were referred to a physical therapist because it was time to do something about the torticollis. We started going to weekly appointments to accomplish a few goals. We had to work on strengthening his right arm and encouraging him to use it, we worked on meeting in the middle with both his hands and having him look in the middle rather than with the tilt. We had to work on getting the rotation and degree of difference on each side symmetrical. So we have done all these things and graduated to bi-weekly appointments.
Now our main focus is on keeping the shoulder loose and continuing to train Ben to look in the middle. Ben will probably be in physical therapy until he can walk just to make sure we don’t have any regressions with his new developmental milestones. He does an awesome job though. It’s really fun to watch him in therapy now that he is a little older and crawling around. In the beginning, he was just kind of laying around getting stretched, but now he’s actively participating in therapy and it’s so fun to see.
After our first initial visit to physical therapy, we were also referred to the Orthotics and Prosthetics specialist to see if we needed a helmet. Our first appointment for this was at the beginning of October. We went and had Ben’s head scanned. It’s a simple process, we just laid him down on his back in this flat scanner and kept him still. Then the machine scanned his head in less than a few seconds and we were done.
There are two numbers that determine if your child needs a helmet. Without getting too into the weeds, one number needs to be below a six and one number needs to be below a 90. Ben was a 2 on the scale below 6, so that was great news. On the scale to be below 90, he was a 92. So he was right on the border for needing a helmet.
With this information, we were kind of confused about what we should do. So our specialist said we still have some time (if your baby is getting a helmet, they need to complete treatment before they are one) and we can wait a month and do another scan.
We went back in early November and had another scan. His numbers were exactly the same. At this point, we had to make a decision. Since there is no way to determine what his head will look like as he grows up, we decided to go with the helmet. We want all the best things in life for Ben and that includes giving him a round head. If he decides to play sports, he won’t have helmet issues later. His risk for his head growing asymmetrically will lower. I joked that if he decides to become the next Justin Bieber and all the teenage girls have him on their wall, he will need a round head. So anyway, we decided to do the helmet.
Two weeks after that second scan, we were fitted for the helmet, made a few adjustments and then took our baby home in the helmet. There was a break-in period to get him used to wearing it so it wasn’t just a sudden change that he had to be in the helmet all the time. After that period, he started wearing it 23 hours a day, 7 days a week. We got our helmet the day before Thanksgiving.
He went in for a 2-week, 4-week and 6-week adjustment to make sure everything was still fitting correctly. Then he had his first scan at 8 weeks. He had made some good progress, but there was still a little room for improvement, so we found out we would be in the helmet for six more weeks.
We had another fitting three weeks after that scan. At these fittings, our specialist just checks to make sure that there aren’t any red or irritated areas and that he has room to grow in the areas that need it. Our specialist makes little minor adjustments every time we go.
Now it is February and we are two weeks away from getting it off!
I feel an incredible amount of mom guilt that we “woulda, coulda, shoulda” done more at the beginning, but when I’m being rational, I also know that we did what we could and a lot of it was a waiting game to see how he grew. So when I mentioned the mom-guilt at the beginning of this post, I try not to let the guilt overwhelm me.
The Best and Worst Parts of the Helmet
We’ll start with the worst and end on a positive note. The worst part for me is anytime I see he is uncomfortable. I can tell when his head itches or he is just kind of over it. He doesn’t let the helmet slow him down, but I can tell he always gets a little happier when it’s off.
Also, it stinks. Literally. Every night when we take it off he has been sweating inside the helmet all day and it smells like a Middle School boy’s locker room. We clean it every night during the break hour and he gets a bath every night, but it still stinks.
I definitely miss kissing his little head. I can’t wait to do that anytime I want. Oh, and he will crack a tooth if he headbutts you, so we have to be careful.
Ok, for the best part. I can already see what a difference the helmet is making. During our little hour break every day, I can tell that his head is rounding out and that the helmet is making such a difference.
Products We Use
Figured I would also share some of the things we use. Please talk to your specialist before using these. I’m not a professional or a doctor. We talked to our specialist about all of this before we did anything.
Honest Wipes – We use these to wipe down the helmet before we wash it. We also use this to wipe it down when he gets food on it. It happens lol.
Honest baby shampoo – We were already using sensitive shampoo, but we had to switch to the ultra-sensitive kind once we got the helmet. He was just getting more irritated from being in the helmet all day with the extra sweat. We also use this to wash the helmet with a washcloth during the break.
Decals and application kit – We got Ben’s helmet decals here. The back says “I asked for a Phillips but got a flathead instead.” Get it? You have to laugh, you know?
Baby wipes – We use the Honest wipes for the helmet, but we use just regular baby wipes to wipe down Ben’s head right when we take the helmet off. It just helps clean up some of the sweat and relieves some itch before he has a bath.