Today my little Adriano gets to take his cranial helmet off and leave it off! He’s worn it 23 hours a day for 5 months (half of his little life) to correct the moderate to severe flattening of his head caused by torticollis. I think it’s fair to say he, and his now almost-rounded head, won’t miss it one bit!
I’m not writing this to convince you to get your baby a helmet or follow the same path we did. There is no judgement on my part because these are personal choices, and every child and his/her circumstances are different. I’m not a doctor or expert. I’m just a mom who would like to help other moms by sharing our experience.
If you are about to go on your own helmet journey or are in the middle of it, I hope this helps with expectations or maybe answers a question or two. This is Adriano’s helmet story:
2 months old
When Adriano was about 7 or 8 weeks old, I noticed that a flat spot on the back left side of his head seemed to be getting worse. I knew that it’s normal for infants to get flat spots, but made a mental note to ask the doctor to take a look during our next appointment. I tried to keep him off that side as much as possible, as well. (I pretty much held that baby all day, every day — even during naps until he was about 4 months old!)
After I showed the doctor his flat spot at that next checkup, his pediatrician diagnosed him with torticollis and gave me the number of a physical therapist to meet with and assess him. He also ordered X-rays to confirm that the sutures of his skull had not prematurely fused (a condition called craniosynostosis). Fortunately, Adriano’s X-rays came back normal.
Torticollis: A condition in which the neck muscles contract involuntarily, causing the head to twist or turn to one side. About 1 in 250 infants are born with torticollis.
Common causes, according to Boston’s Children’s Hospital:
- The way your baby was positioned in the womb before birth
- Abnormal development of the SCM muscle
- Trauma or damage to the muscle during birth
Plagiocephaly: Asymmetrical flattening of the head caused by external forces. Babies with torticollis may also develop plagiocephally because they often sleep with their head turned to one side. Plagiocephaly is not known to affect brain development.
3 months old
At first I was skeptical that my baby needed physical therapy. It seemed like a bit much for a flat spot to me, but I followed the pediatrician’s instructions. I can say, eight months later, that I am happy we went to physical therapy. I realized that holding Adriano all day and keeping him off his flat spot wouldn’t fix the root of the problem — his neck muscles. At a few months old, Adriano’s right side of his neck had about 60 percent mobility.
One piece of advice: I didn’t realize that when I scheduled my second PT appointment that I was scheduling that time and date for all of eternity. I’m sure all offices work differently, but just make sure you pick a time and day that will work for awhile. Sometimes it’s difficult to get the spot you’d like.
My next surprise was when the physical therapist recommended that we meet with a specialist to see if he would be a candidate for a baby cranial molding helmet. My husband and I were saddened to hear this and prayed we wouldn’t have to go the helmet route.
4 months old
We met with the cranial specialist. He suggested we wait two months to see if his head would fill out a bit more on it’s own. He sent us to an prosthetist to precisely measure his head so we would know exactly how his head had changed in two months. My husband and I were happy there was still a chance he wouldn’t need a helmet. I continued doing everything I could think of to keep him off his left side — getting up several times in the night to roll him onto his right side, using a head support in the car seat (there are lots to choose from, my physical therapist recommended this one), and, of course, just plain holding him.
The visit to the prosthetist took about 45 minutes. She put a knit cap over his head and ears, measured it by hand, and then used a computer to scan the surface of his head. (Painless for baby, but it might be hard to keep them still! Bring an interesting toy, if you think about it, to distract them.)
5 months old
I took Adriano to his weekly morning PT appointments. I continued his stretches at home during the week and was starting to wonder if we really needed to go every week. I concluded it was probably best after she noticed he was still favoring one side and started him on a new series of exercises. She noticed things about him my untrained eye could not and guided me on how to work with him at home.
Marcello and I discussed how we would handle it if the specialist said it could go one way or another with the helmet. We decided we would probably go ahead and order the helmet. Our conclusion was that if it had been us, we would have wanted our parents to fix it if they could.
6 months old
We went back to the prosthetist to measure Adriano’s head again to compare it to the scan two months before. I was confident I had done a good job keeping him off the flat spot and thought surely we would avoid the helmet.
But when we went to our cranial specialist appointment, we found out that his head asymmetry had not changed. In fact, torticollis was also affecting the position of his ears (one was farther in front than the other) and the right side of his forehead was somewhat flattened (the opposite side of the flat spot in the back). The way I understood it from the prosthetist is that gravity started to shift everything because of his constant head tilt and tightening neck muscles.
The doctor said his condition was on the severe end of moderate and recommended we get the helmet. We were disappointed, but also relieved that something would be done to correct it. It lifted a weight off our shoulders after being constantly concerned about him laying on the flat spot.
Getting the cranial molding helmet
The next step was to get yet another measurement of Adri’s head a couple days later. Babies’ heads grow quickly and they wanted to have the absolute most current measurement before ordering the helmet. We also chose the helmet color (there were some fun prints available too) and were told they would call us when the helmet was in.
It took about a week and the helmet was ready. I took Adriano to the office and he got his new baby blue helmet. It was hard around the outside and had padding on the inside with texture of Styrofoam. Each appointment afterward, the prosthetist would shave away part of the padding to leave room for his head to grow. And there was a hole in the top.
After he had it on, I looked into his eyes to see what he thought about all this. The blue in his eyes popped with the blue on his helmet, and he a smiled big, toothless grin. That’s Adri — just a happy, go with the flow, kind of guy.
She did a little adjusting, gave us directions, and we were on our way. I felt good with our decision and was ready to finally just move forward and get started, but I was also worried for Adriano and how he would adjust.
These were the directions we followed:
- Day one: One hour on and one hour off, off for naps, off overnight
- Day two: Two hours on and one hour off, off for naps, off overnight
- Day three: Four hours on and one hour off, on for naps, off overnight
- Day four: Eight hours on and one hour off, on for naps, on overnight
- Day five and beyond: 23 hours on and one hour off, on for naps, on overnight
- Call if there were any pink spots that didn’t go away after an hour.
- Use reagent grade isopropyl alcohol to wipe out the helmet once a day.
- Washing it with mild baby soap is OK.
- Don’t use talcum powder as it can dry in the padding and become abrasive to the skin.
- Don’t leave the helmet in the heat as it can melt.
It went pretty well the first couple days. He didn’t really object to it, he didn’t even touch it very much. It was when we went to sleeping in it that he wasn’t very happy. I rocked him and soothed him quite a bit for those first naps. And the first overnight wear didn’t go horrible, but it wasn’t great. He didn’t cry or fuss all that much, he just couldn’t get comfortable and didn’t sleep well. He was in quite a mood by the time we got to therapy in the morning. (However, I have a friend who had a very different experience. Her son slept even better at night with the helmet on!)
He didn’t ever have any troublesome pink spots from rubbing against the helmet, but we did notice that he was quite a bit warmer from it. It makes sense, you lose a lot of body heat through your head. I was a little bummed he couldn’t wear all the cute feety pajamas I had from his brother, though! He was just too hot in them.
It was hard watching him adjust, and I just wanted to take it off and let him be comfortable, but I kept telling myself he’ll thank me when he’s 18 and doesn’t have a misshaped head. I was having a hard time adjusting to it too. I said a hundred times, “You just can’t cuddle properly with this thing!” I wanted to kiss his head and I worried about pulling his head a weird way when cradling him with a bulky helmet.
And it bothered me when everyone on the medical side would tell me nonchalantly “He’ll get used to it.” I understood they saw babies every day with their helmets who seemed no worse for the wear, but this was MY baby and I felt I was asking a lot of him. He did “get used to it” though, and by day seven or eight he didn’t really react to the helmet anymore.
7 months old
We could already see an improvement in his head! I thought maybe it was just my wishful thinking, but our PT noticed it as well. We continued going to therapy once a week, and had helmet appointments every other week to make room for him to grow. (These regular visits were much shorter than the scan visits — around 15 minutes once we were seen.) I continued working with him on stretches and exercises at home too.
8 months old
Adriano’s physical therapist and her student assistant gave him two different assessment tests when he was eight months old. One test concluded he was physically at a six month level, and the other one scored him at about a seven month level. I had never been worried about him developmentally up to this point, but this caught my attention.
I think it caught Adri’s attention too, and possibly offended him, because in the following week he began pulling up to stand, attempting to crawl, and even cruising on furniture. (The right side of his neck now had about 80-90 percent mobility.)
9 months old
Through stretching and exercising, his neck was almost 100 percent by nine to ten months old. He had progressed quite a bit and graduated to monthly therapy sessions. The physical therapist made this decision because he was wasn’t favoring one side any longer, and he had met all his long-term goals. And most of his advancements happened within about a one-week span. (You never know what those babies are going to surprise you with!)
His head was visibly much better. With his hair you wouldn’t notice a flat spot, but when his hair was wet you could still see it if you were looking for it. The prosthetist said he also had a bit of room for improvement on the right side of his forehead.
Adri’s head and helmet started smelling like dirty feet at this point! I washed his head and helmet every day, but they were still stinky! It was starting to warm up in Florida, and we gave him breaks when he was outside, but the poor little guy still got sweaty. I was looking forward to getting this thing off and seeing his sweet little unobstructed face.
In fact, my husband and I were anxious for our appointment with the cranial specialist all month. It had been three months and we were hoping he would give us the green light to take it off. But at the same time, I was also nervous that he would get the helmet off and he would go back to laying on his flat side. I was also curious how he would adjust to not having the helmet. That thing protected him against some nasty falls — and his older brother! He had gotten used to being able to bang his head against things and not feel anything.
On the way to Adriano’s specialist appointment, I was listening to worship music on the radio. They were playing songs from about eight years ago, and I was diggin’ it. I knew all the words and was singing ’em loud (and probably way off key, but hey…). Adriano was getting into it too and started “singing” in the back seat too.
My silly good mood changed, however, after we talked with the doctor. He came in with our prosthetist and told me he saw very little improvement in the back of Adri’s head from the scan report. His forehead had filled out well, but the back still needed time. Two to three months, time!
I was surprised. I didn’t even respond right away. I had truly anticipated the opposite outcome — once again. I was confused, because I could see that his head was improving. But he said the scan showed the difference had only gone from 11 millimeters to 9 millimeters over the last three months. He explained that the skull reacts to the brain growing, and Adri’s head might have grown in the frontal lobe first and that the back would follow.
He felt his muscles for torticollis and felt confident that all traces were gone. That was very good news, but I was still stuck on my baby’s lack of growth and wearing the helmet another three months. So for the past 2,000+ hours of making him wear that thing, we had two millimeters in the back to show for it. The prosthetist could see the visible disappointment on my face, and stayed behind after the doctor left. She looked at Adri’s helmetless head and seemed surprised herself that he hadn’t improved much. She wondered if there might have been a mistake with the scan and told me we could rescan him, which was thoughtful.
By the time we made it to the parking lot, I felt tears stinging my eyes, fighting their way out. I just wanted to make it to the car before they came, but I couldn’t. I was holding Adri close and tears had their way. A woman whipped her car in a spot quickly and rolled down her window. “Are you OK?” she yelled across the lot.
“Yes, I’m sorry,” I yelled back, embarrassed. “We just found out he will have to wear his helmet another few months and I wasn’t expecting it.”
“My son had one too,” she said with a small smile. “His head is round now! It’ll be OK.” I smiled back and thanked her. Her small gesture touched me, and helped me see I wasn’t alone. Looking back, I have no idea why she was there. The doctor was done for the day, and she said her son was done with the helmet. Just a sweet gift from the Lord.
Adriano fell asleep almost immediately in the car. I called Marcello and his reaction was positive and upbeat. I appreciated that, but wasn’t ready for it yet. I kind of wanted to pull him over into my “this is stupid!” boat. Little Adri was going to have to wear his sweaty helmet in the Florida summer, where you can build bricks with the humidity and cook eggs on the sidewalk.
I called Ashby and she didn’t answer. But before I could put the phone down, an alert popped up that said “Pray.” (A weekly alert I had programmed for something else.) I know that it wasn’t a coincidence that popped up at that exact moment. And yes, I should have gone to God first — talked to him first, not everyone on my speed dial.
If I could sing his praises on the way to the appointment when I was happy, I could sing them on the way back when I was sad. After all, He is a God who does not change.
I prayed and cried. In a way, I felt ashamed for crying. My baby boy was healthy, and had even overcome his torticollis. There are many, many parents who have little ones with critical health issues, carrying heavy stress in their hearts. But I decided to allow myself to feel sad in that moment. I would pray for them and us.
If anything, that morning I learned that God had Adriano’s life — and my life — in his hands. He was telling me plain as day that He is in control and walks with us along the path He has set out before us. After a good cry, my tears retreated and gratitude took their place.
10 months old
During one of his biweekly appointments, the prosthetist drilled holes in Adriano’s baby helmet to help him battle the heat. She said she doesn’t like to do this until later in the helmet process to make sure it doesn’t interfere with growth. The holes helped a great deal, reducing his sweat and helmet odor.
We took the boys to Italy to visit their grandparents for two weeks that June. The temperatures the first week were nice, but then it heated up quite a bit to where the boys were sleeping in just diapers. We didn’t have air conditioning, so we decided to leave Adri’s helmet off a lot of the time that last week. It was just too hot, and we couldn’t stand to let him be sweaty and miserable. It wasn’t worth it.
At the end of his 10 months, Adriano started taking steps and even trying to stand up without pulling up on furniture.
11 months old
Prosthetist and physical therapist
During the week of Adriano’s final cranial specialist appointment, we also visited the prosthetist for a final scan and the physical therapist for our monthly visit.
We developed a good relationship with our prosthetist over the span of five months and I valued her opinion. When she put his cap on and I could see the shape of his head well without his hair interfering, and it looked significantly better than even two days ago when I had examined it with wet hair.
During the past week, he had been eating more than I had ever seen him eat. I kept giving him more and more food and wondering where he was putting it all. I knew he was headed for a growth spurt and was happy it was just before we said farewell to the helmet.
I asked her if it was possible to notice a difference in such a short period of time, and she said absolutely. She explained that it’s impossible to tell when the growth spurt will occur, but when it does it fills out and fills out quick. She said she sees frustrated patients that don’t see any difference for two months and then it happens suddenly.
When I told her that I was thinking of calling it quits with the helmet no matter what the scan says, she agreed and said he was was looking very good visibly and from the hand measurements, as well. She also pointed out that he had almost outgrown his helmet and to continue, we would have to start all over with a new one. (No, thanks.)
The second bit of good news came at our physical therapy appointment the following day. Adri showed off his new walking skills and our PT decided it was time to discharge him! It felt like the grand finale week, losing the helmet and physical therapy all at once.
Going into the specialist appointment was easier this time, because we knew we were done with the helmet regardless of the scan results — but we were still anxious to see them.
The doctor was pleased with the results. He said his head measured 1 millimeter away from what they consider normal and that his ears were improved. And the best part was when he said he wouldn’t need the helmet any longer and there was no need for a follow up appointment.
A few questions …
Is your baby’s head perfectly round after wearing the helmet?
No. But as my grandma would say, “Wouldn’t be noticed on a trottin’ horse.” (In other words, it’s not very noticeable.) I don’t think anyone would look at his head and see a flat spot, but we can see a slight flatness if we look straight down on his head.
What was the worst part?
The worst parts were watching him adjust to sleeping in it, not being able to kiss his head and play with his hair. We also worried quite a bit about him getting too hot.
Was it worth it worth it to get the baby helmet?
For us, yes. We exhausted ourselves trying to keep him off his flat spot and getting him to look the other way, it just wasn’t making a difference. We didn’t want him to have to wear the helmet, but ultimately we were given the option to do something about it and decided to move before his skull hardened (which happens by about 18 months). It was difficult watching him adjust, but it was a short period of time. We are happy with the results (and think he will be too when he’s older!).
How did people react in public places?
Most people out and about, at least the ones who talked to us, thought Adri was wearing a helmet because we thought it was cute or to keep him safe. When they commented or asked, I just smiled and told them his head is misshaped and the helmet is correcting it. We never had any negative comments or too much staring. Occasionally someone told us they had a nephew or granddaughter that had one. I usually forgot that he was wearing it and took a moment to figure out what they were looking at!
Don’t blame yourself.
I finally let go of thinking I could have done something to prevent the flatness. I did everything possible to take the pressure off his little head, aside from wrapping him in bubble wrap, but it wasn’t enough. His neck problem started in the womb and I resolved to be OK with the fact that I did my best. A helmet does not mean failure on my part. I’m grateful we have the option available to us to fix it.
If you’re on your own helmet journey, I’d love to hear your thoughts and experiences. Praying for a peaceful and positive outcome for you!