Plagiocephaly and a Baby Helmet: Everything You Need to Know

It all starts when you notice your baby’s head looks a little misshapen. Maybe it’s flat on the back, flat on one side or simply not symmetrical but more triangle shaped. Your pediatrician refers you to an orthotist and your mind starts reeling thinking about a baby helmet. You’ve seen plenty of babies sporting cute helmets, but you never thought your baby would be one of them.

This is exactly the mindset that I went through when my fourth baby was referred to an orthotist for a possible baby helmet. We were a little late to the helmet game, but now that we’re on the other side, I can say I’m so glad we pushed through with it.

My son graduated from his baby helmet at 11 months old after wearing it for three months. And though there is no magic number for how long a baby needs to wear a helmet, I wanted to tell you about everything I learned through his helmet wearing journey.

So here’s everything I learned and everything you need to know about plagiocephaly and a baby helmet.

Plagiocephaly and a Baby Helmet

Cranial Orthosis

Cranial Orthosis is a type of treatment used to correct a baby’s head shape. A baby’s head can become misshapen from plagiocephaly, when a baby sleeps in the same position and it causes a flat spot on the side of the head. Plagiocephaly and brachycephaly (flatness across the back) have become increasingly more prevalent as parents are encouraged to place infants on their backs to sleep because it has a drastic reduction in SIDs.

My son had torticollis, which is a condition that causes the muscles of the neck to tilt down to one side. He most likely developed this in the womb because I can attest that he was my biggest baby by far and very crammed. For him, torticollis caused him to sleep with his head turned only to one side, which left a flat spot on that side of the head.

On average, babies are less than 12 months old when they start helmet-molding therapy and will need to wear the helmet for at least three months. Not only are their head shapes more malleable at a younger age, but as they get closer to age one, they start to grab at the helmet more and mess with the velcro closure.

Besides plagiocephaly, cranial orthosis is also used to treat craniosynostosis, which can sometimes involve surgery to correct.

Non-Helmet Alternatives

We tried for a few months to correct my son’s flattening ourselves, but it’s really hard to do this when a baby has torticollis. He was seeing a physical therapist for torticollis, but the therapy took about 6 months and we couldn’t wait until it was over to see if it corrected his head shape because he finished therapy after he was 11 months old.

If you notice flattening of your baby’s head, it’s worth trying some of these methods before you go the helmet route:

Plagiocephaly and a baby helmet measurement

Measurement Standards for Getting a Baby Helmet

Because my son’s head shape wasn’t improving with our repositioning strategies, his pediatrician referred him to a pediatric orthotist. At our first visit, the orthotist measured his head manually as well as digitally using this SmartSoc Cranial Module (see image above).

The data from both measurements were very similar, and based on the Plagiocephaly
Severity Scale, one measurement fell into the moderate category and one into the mild category. This basically put him borderline for a baby helmet. At this point he was 5.5 months old. After debating what to do with the orthotist, we decided to go ahead and try for the helmet. My orthotist’s office submitted the claim to insurance, which denied his helmet.

At this point, I could tell his flat spot was worsening and his physical therapist (for torticollis) agreed. So we filed an appeal and his physical therapist submitted a good bit of supporting documentation.

Two months after his original measurements, his helmet was finally approved by insurance. We went back to the orthotist for another measurement before he ordered the baby helmet and we discovered that his head shape had drastically worsened in the past two months. It declined so much that these updated measurements would have never elicited a denial from insurance had they been submitted first.

I’m not certain what baby helmets cost out of pocket without the help of insurance, but I’ve heard they can range from $2,000 to $4,000. Thankfully, we weren’t forced to make that decision after our appeal was accepted.

Baby Helmet Look and Feel

Once the final measurements were taken, the orthotist ordered the helmet. Though there are several brands on the market, our orthotist uses STARband. My son specifically had the STARband side open baby helmet, which is the most widely prescribed design.

Though there were a myriad of print designs to choose from for the helmet, I went with just a basic blue. Some of the designs looked a little stretched or pixelated to me, and I figured a white helmet would get super dirty. If he got his helmet in the winter instead of just before summer, I totally would have gotten black and put and G on the side to represent the University of Georgia football team! You can also order themed or personalized decals for helmets.

The helmet arrived in less than two weeks and our orthotist was very adamant that my son begin wearing the helmet the next day just because his head shape was continuing to shift. So we went in the day after it arrived for him to show me how to put it on and off and for him to fit it correctly.

The helmet is made of a hard plastic shell with a foam liner. At this first fitting, the orthotist shaved down the helmet just above my son’s eyes to get the right fit. He also shaved down the foam on the sides in front of his ears simply because my son’s cheeks were so chubby that the baby helmet was pressing on them too much.

Onboarding a Baby Helmet

After our first fitting, we went home and I thought: “What have I gotten myself into?” It took about a week to work up to him wearing it 23 hours a day. Most onboarding schedules ramp up in 5 days, but we went a tad slower.

Even though my son started wearing his helmet in April, he was sweaty all the time in the helmet. Most people say that a baby’s body will acclimate to the helmet in about two weeks. I think that also depends on the season as well as the size of your baby. My baby has always been chunky, so apart from the helmet heating his head, he has lots of extra insulation. It seemed like his body temperature did adjust after a couple weeks, but then we had a bout of hot summer weather in May, and after that, his helmet was sweaty nearly every time I pulled it off.

Plagiocephaly and a baby helmet fan

Rules of Wear for a Baby Helmet

With time as a motivation, I was very strict (especially the first two months) with my son’s helmet wearing. He had it on 23 hours a day, and I would only remove it to get him dressed in the morning and then for his dinner at night followed by bath time. Once his hair dried, the baby helmet went back on.

Of course, there are times when you will have to remove the helmet. During his three month wear, he had a couple fevers and sickness (thanks to older siblings) and I had to remove the helmet. Sometimes, he had it off for only 24 hours but one time it was 3 days due to an ongoing fever. At that point, I did onboard gradually instead of jumping into 23 hours a day again.

At one point, I noticed a small rash on the back of his neck at the base of his helmet. Heat rashes are common with baby helmets, so I kept an eye on it and it went away in a couple days.

Just shy of two months into his helmet journey, swim season hit, which changed his wear time. Because he was still a baby, he never swam for long, but if we were in the pool or at the splash pad for 30-60 minutes, then I would take the helmet off. Besides being hot, I didn’t think the baby helmet needed to be in the water.

Even in the shade, summertime is hot for a baby in a helmet. I purchased this clip on fan from Amazon and it worked wonderfully. I clipped it onto the stroller to keep him cooler when we were out and about and even clipped it onto his car seat out of reach.

Some orthotists recommend using 91% rubbing alcohol to clean the helmet while others recommend 70%. It’s best to go with whatever your orthotist suggests. I cleaned my baby’s helmet once or twice a day since it was summer season and so stinky. You can clean with a spray bottle of rubbing alcohol or rubbing alcohol wipes (91% isopropyl wipes or 70% isopropyl wipes ), which make it super easy and fast to clean. I chose to use wipes to make my life a little easier, plus, I didn’t like the idea of having a spray bottle of alcohol around my other kids who can be a little too curious.

Plagiocephaly and a baby helmet sleeping

Sleeping and Eating in a Baby Helmet

I won’t lie, the helmet made breastfeeding and rocking my baby to sleep a bit difficult. Since he’s a bigger baby, it also made babywearing him in the front a little dangerous as I got knocked in the mouth a few times.

Nursing him took some adjustment to get him cradled him my arms with his helmet on. I had to make sure I turned his body toward my torso, which is better for the baby anyway instead of him only turning his neck. Thankfully, the helmet did not affect his nursing in any way, it just took me a while to get comfortable, especially if I was nursing on the go and didn’t have a good way to prop up my arm.

During my son’s three months wearing the helmet, he was at the age when eating solid foods started to ramp up. For most meals that he ate himself, such as finger foods, I removed the helmet to avoid it getting super messy. If I was spoon feeding him, I left it on because I could control the mess a little better.

None of my babies start sleeping through the night until 11-12 months old. So when he got the helmet I was a little nervous because I didn’t want his sleep to regress even more. My orthotist said that surprisingly, many babies who get a helmet actually start sleeping better with it on. I was very hopeful that my baby would fall into this category, but I can attest that he did not.

What he did learn to do during his helmet tenure was to roll all around the crib at night. His most common sleeping position was directly on his side. Every once in a while, I would check on him and find him face-down. My orthotist assured me not to worry about this because the helmet provides a little padding for breathing, which is true but you can see from the image above that it is a little startling.

Plagiocephaly and a baby helmet

Surprising Benefits of a Baby Helmet

Though the intention of a baby helmet is to help round out the head, I found a few other benefits worth noting.

It protects a baby’s head when learning to crawl and walk. I can’t tell you how many bruises my baby got on his forehead right AFTER he graduated from the helmet!

The helmet also strengthens neck muscles. Torticollis is a main contributor to many babies with flat heads. For my son, we saw the physical therapist weekly to address his neck issues, and she confirmed that the helmet also strengthens his neck even more with the added weight.

My son had a dermoid cyst on his forehead that was scheduled to be removed via surgery. The week after he graduated from his helmet, the surgeon checked him right before the operation and was shocked at how much the cyst had diminished in the past three months while wearing his helmet. Because of his young age (11 months at the time), we decided to postpone surgery until the cyst grows larger and he is older.

Despite so many babies wearing orthotic helmets nowadays, I met so many people who had never seen them. People are curious creatures, so I had plenty ask me what is wrong with him—kids and adults alike. I had no problem answering their questions by explaining how part of his head is flat. If nothing else, it was a great conversation starter.

What to Expect at Orthotist Follow Up Visits

Once your baby gets a helmet, you will visit the orthotist every two weeks until helmet graduation. Because babies are constantly growing, it’s important that the orthotist checks the fit of the helmet each time. My orthotist said that the most change typically happens in the first month—and I found this to be true with my son. Babies that need longer helmet therapy may need more than one helmet as their head size grows.

I’m sure every orthotist is different, but my orthotist measured my son’s head at every visit. Sometimes he measured manually and other times he used the special cap to measure digitally. I loved being able to track the progress and it gave me a boost to keep up with our 23 hours a day regiment.

Though I cleaned the helmet daily, the orthotist offered a cleaning system at his office that I got done at every visit once the weather turned warm because my baby’s head sweated so much.

In my mind, the mark of a great orthotist is one who stays in open contact with parents. Simply put, cranial helmets are a bit awkward, especially at first. I had tons of questions that first month and ended up emailing images of my son in his helmet to the orthotist to review. I wanted to make sure the fit was correct. One time, I was worried the side of helmet in front of his ears was too tight because it left red marks. Another time, I was concerned about the gap where the spacer goes. Thankfully, my orthotist responded quickly each time to put my mind at ease, and one time even scheduled an extra appointment so my son could be seen.

How Long Will My Baby Wear a Helmet?

It is so hard to predict how long babies will wear a cranial helmet. Many babies respond best during first month and often at the tail-end of therapy, but the average wear time is 3 to 6 months. Here are are a few factors that will affect how long a baby will wear a helmet:

  • The severity of the plagiocephaly or flatness.
  • The age of the baby when starting helmet therapy. Younger babies typically respond faster because the cranial plates are more malleable.
  • How often the baby wears the helmet. Does he wear it 23 hours a day or just 18?

My son graduated from his helmet at 11 months old after wearing it for three months. His head shape was not perfect at graduation, but his measurements were well within the range of “normal.”

post baby helmet

Mama Thoughts on a Baby Helmet

When I learned my baby was borderline for helmet therapy, I wasn’t sure what to think. Should I drop the issue or fight insurance for a helmet? I decided that it was unlikely I’d look back on his first year and regret the helmet, but there was a strong possibility I could look back and regret not fighting for a helmet. So for me, I chose to fight for the helmet. I knew it wouldn’t be fun as the mama having to deal with the helmet, but helmet therapy wasn’t about me.

That first week he had the helmet and I had to adjust changes, I got really nervous. I thought: what have I gotten myself into? But soon after, my nerves and our lives adjusted. At that point, the helmet was part of our routine. It didn’t bother my baby, so I tried not to let it bother me. I kept my mind focused on the end game of helmet graduation and used that to fuel my strictness with him wearing it 23 hours a day.

Looking back, I’d do it all over again. The months he wore the helmet were such a fleeting time in his life.