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
Cranial specialist
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
Also:
- 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.
Sing praises
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.
Cranial specialist
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!
Our son will be getting his helmet next week. I’m feeling nervous but I really think its the right choice. Thank you for sharing your wonderful story, makes things a little less scary.
Hi Naomi. I’m glad this made it just a little less scary. Praying your sweet little guy adjusts quickly. (And mama too!)
Thank you so much for sharing you and your sweet boys story! We just found out our 4 month old is a candidate for a helmet and I have been somewhat of an emotional wreck over it. Your testimony is a sweet gift from The Lord!
Lisa, I remember how much time I spent thinking about the helmet, too. I’m praying for peace in your heart and clarity in your decision. I’m pretty sure the helmet causes much more stress for the mamas than the babies!
Thank you so much for sharing your story. My lil guy is taking a break from the helmet. It has caused a large lump on the right side of his head, the prosthetist has never seen anything like it before. She says to wait until it goes away and then I can put it back on.
Do you have any suggestions on sleeping in it? My lil guy is having such a rough time sleeping in it. Any suggestion would be helpful. Thanks a bunch.
Adri is absolutely adorable. God bless:)
I’m so sorry to hear about the bump. And I hate that sometimes little ones have a miserable time sleeping in the helmets. We mothers spend a lot of time and energy to make sure they get their sleep, and it’s a tough decision to keep the helmet on when it’s disturbing it. I wish I had a specific trick up my sleeve to share, but I’m afraid I don’t. The best piece of advice I can offer is if you decide to do the helmet, be consistent. Commit to the 23 hours a day (or whatever is prescribed) so they can get accustomed to it. If you leave it on all day one day and then half a day the next, it’s confusing. That’s probably just common sense — sorry I can’t offer more. Praying the bump heals and his head is corrected quickly! Stay strong, it really will be over before you know it :)
Thank you so much for sharing your sweet story! My husband and I just found out that our baby will need to get one and our first appointment is a week away. It was nice to read about someone else’s experience so I have a better idea of what to expect. It’s completely nerve-wracking! But, I know it’s for the best and I trust that God has the best idea in mind… everything happens for a reason. Thanks again for sharing… your son is adorable and looks like everything turned out great for you guys!
Kris, I’m praying the helmet experience goes quick and that your little one adjusts quickly! Best, Kate
Thank you for sharing your story. It means so much to be able to read about this from someone who as already gone through it. We have completed the PT but still waitin to get in to see the specialist which is very frustrating when timing is everything right now. Baby is seven months so the clock is ticking to start the process….. Thank you again for sharing all the tips and insight is great to know as we move forward.
I’m happy it helps a little. That’s great you’ve finished the PT! And I understand waiting to get in to see the specialist. The one we saw was only in town once a month, which was frustrating. I hope it is a smooth process for baby and you!
Kate, thank you for sharing your story. I have come back to it several times (Adri was just so cute with his helmet) since we started our journey with our son Parker’s torticollis, PT, and now the helmet. Parker was just measured for the helmet today and will probably have it in the next month. I am feeling sad and overwhelmed that we actually have to get the helmet. Reading the part of your story where you were told he had to continue to wear the helmet made me cry, as I am feeling very emotional about all of this right now, plus I also listen to worship music on my way to PT and could totally see that happening to me too! I also was wondering were you still nursing when Adri had his helmet? I am wondering how that all works with a big clunky helmet. I am happy that Adri is all better and again, thank you for sharing. God bless.
Cortney, your comment brings tears to my eyes. I hate the the helmet situation has you feeling blue. To answer your question, I was still breastfeeding when Adriano got the helmet, and it was a bit of an adjustment to get used to it. But we got the hang of it quickly and I’m sure you will too. You and little Parker will both learn to work around it. It’s an emotional time at the beginning, but don’t fret too much. You’re doing your best and it won’t last forever. Saying a prayer for you and Parker. God bless you too!
Lady’s thanks for sharing. We notice the flat head on our daughter when she was 2 months and when we took her to the ped she said to wait and try to move her to the other side and wait until she has 4 months. Today was our 4 month visit and Yes my baby needs to go to the specialist and will be next week. But you know the Lord is my shepherd and reading your comments give me the strength that I’m not alone in this new route and even if she really need to use the helmet she will be fine. May the Lord bless you both. : )
This was the best blog post I have read on a helmet experience! We are about to start our helmet journey, and one of my concerns has been Houston heat come April. I identified with your story in many ways and am so grateful for your honesty. I just know that I will end up having a break down moment, and I will think about you crying in the parking lot and remember to talk to HIM first!
We go get my daughter Reagan’s helmet tomorrow and finding your story was such a blessing. I’ve been stressing over the heat because we live in Texas and Reagan is 6 months and already prefers being outside. Plus knowing I’m not crazy for being so emotional about it helps. I’m praying she adjusts easily. She’s such a happy go lucky baby I don’t want something irritating her continuously. So glad your little one benefitted so much from his, and that y’all are through with the process. Thank you for sharing.
Hi Renea. If Reagan is a happy go lucky girl, then I’m sure she’ll adjust quickly. Wishing you the best and sending prayers for your little sweetie.
Just found out today that my 4 month old granddaughter will need the helmet. I’m so glad that I pulled up your site as it was helpful and informative. You are very kind and helpful to others for sharing your and your son’s story. You have a very handsome son!
Thank you, Lynda. Wishing your granddaughter and family all the best! — Kate
Thanks for sharing your story. After reading this post, I knew that we could get through our own helmet journey with our son. We are almost halfway through and we already see a huge improvement. I was so worried he wouldn’t get used to wearing it, but he did and now I fear when it comes off because he’s gotten so used to banging his head on everything. I agree, it’s awkward cuddling with it on, but I know he will thank us in 18 years!
Hi Jenny! I’m happy to hear you’re halfway done and seeing improvement! Adri got used to banging his head on things with the helmet on too! He tried banging it around a few times after the helmet and wasn’t too pleased with the result. He quit pretty quickly :)
As I was reading this, I found myself being able to relate to everything you said. My son was diagnosed with Torticollis at 2 months old. We’ve been going to therapy every week for the last 4 months and he’s almost met all his goals. He got his helmet 2 months ago. It’s been an adjustment, but I think I’m the one that has a problem with it…he doesn’t seem to mind it anymore (except for when it gets too tight!)! I’m really hoping that he keeps showing enough progress and he’ll be out of it by July. Thanks you for sharing your story….it makes me feel better about our situation and knowing that we made the right decision to go with the helmet.
Thanks for the great story. we are going to see a doctor in a week about a helmet or possibly surgery (head may have fused early which cause a flat spot on his back, keeping our fingers crossed though) either way he will be wearing a helmet. It was great to hear your success story and that your little man didn’t mind it too much. I love how people think that he was wearing it because you thought it was cute. I believe it though, my little man has glasses and everyone thinks that they are just for looks!
I’m praying your little guy doesn’t have to have surgery — or a helmet for that matter. And I can’t believe people thought you put glasses on him for looks! Seriously!
Your story brings me so much comfort. I have been researching the pros and cons of putting my sweet baby girl in a helmet. I am scared and confused and sad all at once. She’s got a really bad flat area on the back of her head and as much as I try to hold her and sit her up it’s not going away. She’s also not progressing nearly to where she should be. I am relieved to think that with a helmet and some PT she could be right on track again! Thank you
That makes my day, thanks for letting me know. I’m sure your little girl will surprise you and start doing things all the things she “should be doing” of a sudden. Sending my best wishes to you.
Thank you for posting your story. I feel like it is very similar to ours. My son is going on month 5 of his helmet. While I see a big difference, our doctor still thinks he will need a few more months, which breaks my heart. I thought we would be almost at the finish line. Your story made me feel a little better about the added time and not calling it quits yet, which I very much want to do! Hoping it goes fast and I can give him helmet free cuddles soon!! :)
I’m sorry. I was just telling another mom that I was frustrated and even kind of angry at the end. I pushed through with the extra time recommendation because I knew we only had a small amount of time before the helmet wouldn’t fit any more. Not too much longer! You never know, he might get that last extra growth spurt right at the end. I hope it goes faster than you think.
My grandson is 5 months old and just got his helmet and so far he crys and we are trying everything we can so far its been very stressful and i am praying it gets better with time this is hard on us all to adjust to is there anything else that might help
Ah! That makes me so sad to hear. I wish I had magical advice to give, but the best I can offer is to be consistent. I’m not a doctor, and of course you should make sure it fits properly with no red spots etc., but the closer you stick with the doctor’s plan, the faster he will get used to it. If breaks are offered frequently, he’ll expect frequent breaks. I’m saying a big prayer for you and your family, that he’ll adjust quickly.
Thank you so much for sharing your journey. My baby is 8 months and will be getting his helmet next week. We also just finished PT 2 weeks ago. We went to see a specialist when he was 4 months and they wanted us to hold off on the helmet to see if Cason would round it out on his own. Well he didnt so I’m really nervous I hope we didnt wait to long to get the helmet. My question for you is when baby Adri was about 8 or 9 months did you see major improvements in the flatness or was it minimal?
I saw minimal improvement in the beginning (month 7), but the bigger changes were at the end (about month ten). Hope that helps. Try not to fret, you’re doing your best!
Thank you for writing about your experience. We go to pick up my son, Cooper’s, helmet on Tuesday and I have been distraught just thinking about it. I’ve been most worried about being about to snuggle him and kiss his little head. Were there other ways you felt like you could love on him to comfort him just as much?
Yes, it’s definitely more difficult to snuggle with the helmet, but you can still hold him and squeeze him and cuddle. I always found myself playing with his cute little feet and caressing his chubby little arms. The helmet didn’t stop us from snuggling and giving kisses! Actually, sometimes I kissed the top of his helmet like I would his head!
Your story has helped me so much. My son is on his fourth day, wearing it for 8
Hours at a time. He has been really fussy today and finds it hard to get comfortable to go to sleep. I’m hoping he gets used to it very soon because I hate seeing him like this.
I am so glad to read about your experiences with the cranial molding helmet and how your little one had a good outcome. My baby was fitted for a helmet for plagiocephaly when he was 7 months old, after months of my pediatrician dismissing my concerns and telling me the flatness would resolve on its own. I sympathize with you about the heat and the humidity in FL. My little guy is wearing his helmet in the summer months in Houston – not pleasant. I do feel that the treatment will be worth it in the end, as we have already seen a substantial improvement in head measurement. It’s nice to read about moms who share a similar story.
We’ll be getting a helmet for my son soon, but I’m disappointed to hear that our insurance won’t cover it because it’s considered “cosmetic.” Did your insurance cover it?
Our insurance helped, but we had a large chunk to pay. I have a friend who went through this with her insurance company and I think she argued her way into getting them to contribute. Maybe read your insurance plan to get familiar with it and make your case with them? Can’t hurt to give it a try.
Thank you for sharing Adriano’s helmet journey. It brings much reassurance and comfort to my husband and I. Our son Maxwell is 5 months old and will be receiving his helmet in 2 weeks time. We have been having a hard time accepting the idea of the helmet but know its best for our little guy and the results will be worth it in the end
Again, thanks for sharing your story! Great blog you have! I really enjoy it.
Thank you. Just thank you for this post. I’m so glad I came across you blog. We are about to embark on our helmet journey and I am having the same thoughts, feelings you have described above. After reading this, I’m confident we’re doing the right thing for our son. Again, thank you.
Thanks for you sweet note, Molly. I’m praying your journey is peaceful and he adjusts quickly. Best.
Thank you for sharing this! Our son is adjusting to his now, he is doing very good on day six… Your post is very helpful and touching!
Thank you for sharing your journey. My husband and I just found out that our 6.5 month old daughter needs a helmet. We are extremely frustrated becuase since day one, we have questioned her pediatrician about her head shape. They assured us nothing was wrong and it would just “correct” itself when I had that “mommy gut” feeling that it wouldnt. We finally went to see a Physical Therapist and they definitely said she needed the helmet. Even though we knew the whole time she needed it, we are pretty upset. We feel like we should have pushed the issue more and we also are scared to get the helmet. We feel like we just got over colic with our daughter, she is finally sleeping somewhat. Now, i’m sure we will have more issues sleeping when she gets the helmet. We are just very nervous and I do my best not to blame myself. It’s nice to see the thoughts you had because I feel like you were saying exactly how I feel. I’m praying all goes well with our experience like yours did. Thanks again for sharing.
Hi Lindsay. Good for you for listening to your “mommy gut.” It paid off. But don’t dwell on the timing too much. Adri didn’t get his helmet until he was almost 7 months and it was still very effective. We were even on top of it from the time he was 2 months old and it still wasn’t recommended until that time. I think if you get it too early they will grow out of it quicker, as well. As for the sleep, I will say a BIG prayer for your family. I truly sympathize with what lack of sleep can do a poor mama. Thanks for sending me a note and all my best wishes to you and your little girl.
Our girls are getting their helmets tomorrow. Your blog post is great and I sure hope it helps Alexandra’s little head since we are starting so late (10 months). I appreciated your update about the growth spurt helping! I am sure one good growth spurt will be all she needs. I am just in tears thinking about not being able to kiss or smell their little baby heads. I sure hope they are not too uncomfortable in them for sleep.
Thank you so very much for posting this, & thanks to everyone else for leaving your stories, too. We’ve just started the helmet part of our journey after several months of therapy for her torticollis. Reading your stories have made me feel less alone in our journey!
My daughter just got her helmet yesterday. So far, so good. She won’t sleep in it until Sunday night, but she’s napped several times & done just fine. She’s almost 7 months, & she’s on the mild end of moderate, so we’re hoping that it’ll just be 3 months.
Thank you so much for sharing, my baby girl who is 5 1/2 months has also been to PT and then to the helmet doctor (as I call him) – she will also have to wear a helmet, she’s always turning to the right!. We have to wait until she’s 6 months of age before she gets measured for it – apparently they don’t work with babies under 6 months as their skull is still too soft.
The normal is 12 (milimiters I think!), she’s at 19, the worst the doctor has seen is 22ish.. so she’s “severe” we are blessed though that she does not show any facial deformities – which happens around that 22 mark. and her ears are a little off (like your baby) but apparently something that will be able to get corrected. Your story gave me hope, made me cry, and put me at ease too! – Thanks for taking the time to document it all. God bless you and your family!
I’m praying for your journey, Lily. It sounds like you are on top of everything and have a good, positive attitude! Best to you and your family.
Thank you for your story. Getting our six-month-old daughter evaluated this week for a helmet. Feeling really defeated and sad. Your story was such an encouragement.
I’ve shed a lot of tears this morning after getting the call to set up my son’s cranial molding appointment. It has been a struggle since January with physical therapy and trying to do everything we could to avoid it, just as you did. He started at 14mm and improved to 10 but just wasn’t going any further. Reading your post has given me hope and helped me breath a sigh of relief. Sometimes, just having someone understand where I’m coming from is a relief. I know there are much worse things that could be happening but when people tell me there are families that would trade places with me in a second it’s hurtful, because this is a big deal to ME. Kind of makes it sound like my feelings aren’t valid ya know? Coming from the NICU (he was a 28 week preemie) I know it could be worse, but just something I don’t want to hear. Anyway, reading this post has made it feel more real and also reminded me that there is a light at the end of the tunnel. Thank you for sharing your story.
Thank you so much for your story. We are currently on month 4 of the helmet for our son (9 months old). We are currently in the discouraged and angry stage of the helmet process. We had a disappointing helmet appt last week and they basically told us that we just need him to have a growth spurt so it might be a few more months. It’s so frustrating because there is no definite time frame. We’ve been so good and consistent with the helmet wearing. I really hope that we can have some significant growth soon. What’s even more disheartening is that we’ve almost graduated from PT. He’s reached his goals and they don’t need us back for 2 months, just to make sure that his crawling and walking get off to a good and symmetrical start. We are praying for a happy and round headed ending like yours!
Thank you so much for writing about your experiences. My son is about to get his helmet in a week and I’m feeling so many emotions about it just like you described. It really helps to read about your experience and know it’s going to be ok. I’m just worried about him being hot and adjusting to it just as you were. I also worked with my son for 2 months trying to correct it on our own and it didn’t help enough it was so stressful so we are doing it as well because we can and want to correct it while we can. Just feeling nervous about it all. Thank you again for writing about your experience
Thanks for posting this. My 5.5 month old was referred to PT for her flat head. At her first appointment today there were some very similar situations which you have described, (her left ear is moving forward a little, and her forehead is getting flat on one side). It’s great to read about your son’s journey and helps with understanding things a bit better.
I would be interested in knowing the journey after the helmet. My son also went through all of this. He is now 6 years old, a few months after the helmet they found a sty on his eye that had to be surgically removed, in this process his eyesight was tested and found out his vision was extremely bad and now he wears glasses and his eyesight has worsened. He also has had a lot of behavioral problems, and to this day he still struggles with behavior. I wonder if any of it had to do with his flat had, brain development during or before the helmet. Everyone wants to right away diagnose him with ADD/ADHD or Autism. So I’m curious to see if any other mothers are experiencing any of these after the helmet journey.
Jolene, I’m so sorry for your child’s struggles. Adriano will be three in a month and so far we haven’t had any eyesight or behavioral problems. Anyone else have any input?
My son is 4 months old getting his helmet on August 5th due to torticollis and a bad flat side of his head. I was wondering if you breastfeed him through it all and if so how did you manage that? I’m terrified I will need to stop nursing due to the helmet.
Hi Krysta. I did breastfeed Adriano while he had his helmet. It took some getting used to managing the bulky helmet while he nursed but we got the hang of it. I’m sure you will too! You will absolutely not need to stop nursing :) Best to you.
Thank you! Your blog helped me feel much better about getting my sons helmet. I was seriously feeling the same way you did and thought I was the only one.
I’m so glad. You’re not the only one!!
We go Wednesday for my daughter’s helmet. She is already 8 months. Thank you for sharing your story! Great to see the before and after. Do you have any tricks for keeping them cool? We’re in OK and it’s been in the upper 90’s.
Gosh, I don’t have much advice on keeping baby cool except just putting less clothing on. Sometimes I wetted the bottom of Adri’s feet to cool him off too. I hate to say it, but I was always monitoring his temperature :/ I’m praying for a quick adjustment for you both and that the heat doesn’t bother her.
Thank you sooo much for sharing your story! We in week 3 of my son’s helmet and he doesn’t even notice it during the day anymore. He’ll be 7 months next week. We still hold him or wear him for naps. We were doing that since about 4 weeks old too to keep pressure off his head. But night time is a struggle! His crib is set up like a side car, and I used to be able to nurse and lay him down no problem, only wake once to nurse through out the night. But this darn helmet gets in the way of a smooth transfer to the crib :( It’s seriously driving me nuts night after night that I can’t just lay my baby down to rest anymore. A few times I’ve managed to VERY carefully roll him off my arm and slide my hand out from under him. I’m struggling to get decent sleep now that’s he’s waking up every 2 hours or so. I’ve resorted to keeping him in bed with me, which helps him sleep much better. He needs to snuggle close to me to sleep in it, which is great for him, but I’m not sleeping very well now.
Sorry for the life story here lol, but it was just nice to hear another mama that struggled with this helmet journey. I read most of your story last night while I was up late with my son asleep on my chest and it reminded me that we WILL get through it, and IT will come off. Someone shared a link to your blog on a facebook post I made looking for any and all help, and I’m so glad she did! thanks again for sharing!
Sam, I’m so sorry you’re struggling right now! But yes, it will pass and there will be a day when you won’t even think about that helmet anymore. And my guess is, in the meantime, he’ll keep adjusting to it and things will get easier. What a lucky boy to have a mom as caring as you.
My daughter is 5 months old and just received her helmet for the same reason your son did. Right now we are on the fourth day and she is trying to sleep in it tonight. What are some suggestions you have for positions to sleep in? What did your son sleep in as far as a crib, rock and play, pack and play, ect. My daughter really hates hers and we have such a hard time putting it on because she fights it so much.
Melanie, I’m sorry I can’t be much help on the positions to sleep. My son just kind of tossed and turned at first until he got used to it. I’m sorry she’s fighting you to put it on. That must make it so hard. Saying a prayer she adjusts better tonight.
Dear Kate,
Thank you so much for sharing your story! I came across your story when I googled “success stories of helmets in infant plagiocephaly”. Reading your story made me cried my heart out, as I was going through the dilemma of whether or not to go ahead with the helmet therapy for my boy.
My 8 month old boy has got plagiocephaly and torticollis too. Similarly to your son, the position of his ears has been affected and the left side of his forehead was somewhat flattened too. The physiotherapist recommended that the helmet therapy would be better for him, in addition to the repositioning exercises.
After reading your story, I told my hubby that I would want to go ahead with the helmet, for one for your sentences spelt out my exact sentiment; “if it had been us, we would have wanted our parents to fix it if they could.”
My son has just received his helmet last Friday, and he is still adapting to it. I hope that his head shape will improve with time.
No doubt that I’m really heartbroken to see my boy going through the entire process of wearing a helmet, I’m really thankful that we have been given a chance to correct it, and that he doesn’t has to be constantly lying on the affected side.
Thank you once again Kate! Your success story is truly inspiring, and has brought hope and strength to mummies like us with similar problem. =)
Wow, I cried when I read your comment! I’m glad you’re happy with your decision, it’s a hard one to make. I’m saying a prayer for your family right now. I pray you’re encouraged by results, but it takes time. We saw a little improvement in the beginning and not much more until the last few weeks. You never know when those little noggins are going to have their growth spurts! Best to you, Kate
Thanks for sharing. Our son got his helmet about a week ago. Our physical therapist said she didn’t need to see us once she referred us to the orthotist. He still turns his head to that one side when he’s sleeping. I wonder if he should be doing the exercises and if his torticolis is still there? Hmmm. I think I have a few questions for the doctors now. How can they tell if the torticolis is gone? Thank you for your help.
Hi Natalie. Hmmm. I wonder why she dismissed him from PT when he’s still turning his head to the same side. We kept seeing the PT, but every case is different. Our specialist was able to tell the torticollis was gone just by moving his head around during an exam. The PT was able to tell after exercises. I’m sure your doctor can answer these questions. Sending my best to you and your son.
My son was diagnosed with very mild torticollis, and has a helmet. However, it took the pediatrician way to long to refer us than it should have. He didn’t start wearing his helmet until he was 11months. I have had so many struggles with this thing! Every time he wears it, he sweats, and gets a heat rash. So, you can’t put the helmet on with a rash. It took 3-4 days for the rash to clear. And, I’d put the helmet on again and he’d get another rash. We have tried everything, and he has hardly had any helmet time. I am so discouraged.
How stressful, Tabitha. I’m sorry you’re having such a hard time with the helmet. I’m praying the rash clears up for good and that by his next growth spurt his head shape will improve. I’m also praying for your peace. Hang in there, friend.
Hi, would you recommend the starband or the doc band?
we are in the process to have one and we went for both companies and we need some other opinions from who used them in the past. we would appreciate sharing your experience with us. Thanks.
Mina, I’m sorry I really can’t say which is better because I haven’t tried both! Also, I’m not an expert.I think I would refer to the doctor on this one. Best to you and your little one.
Hi, I would like to share a potentially helpful tip and echo the thanks of the other commenters. There is something very comforting about learning about another’s experience, especially one as thoughtfully detailed as yours. My sweet son is 9 weeks and 1 day old and we are going to see a cranial specialist next week to talk about a helmet, as recommended by our pediatrician yesterday in our 2 month old appointment. When he was just 2 weeks old our doctor noticed he had torticollis and resulting plagiocephaly (I thought his head was just misshapen from a long labor!). Our best guess is that the torticollis if not the plagiocephaly happened in the womb–he is a big baby and I think he sort of found a position and stayed put once he became too large to comfortably move around in utero. (I actually ended up needing to have a c-section after hours of pushing because he was so resolutely turned to his side!) I was looking for a way to keep his head from slumping when he’s in the car seat and just a couple days ago started using a neck support cradler made by Summer Infant (link below). It worked so well I am using it in his rock and play when he’s napping too to keep his head from turning. Obviously it’s too early to know if it’s making a difference but I do feel like it is keeping his head straighter! It also props it up slightly and may be relieving pressure that way? It velcros around the straps on the car seat so it works great there. I watch him when he’s wearing it in the rock and play because it is loose and could pose a suffocation risk. (Please be so careful if you decide to use it there too.) I was also initially worried about it covering his ears but he’s still responding to sounds normally while wearing it. It really does seem like it might help. We are doing PT as well so I am really hoping for the best. Good wishes to you all and your precious little ones. I have to say I think despite their head shape troubles these babies are lucky to have such caring parents who are trying so hard to do the best for them!
http://www.amazon.com/Summer-Infant-77390-Cradler-Ivory/dp/B0054G1JSM
Thank you for sharing! I feel like I could have written the first half of your post. My son has had his helmet for only a week and adjusting well as I’m probably having a rougher go at it. I feel bad complaining because he does so great in it but I feel terrible not being able to kiss his forehead or fully cuddle him. He has such a sense of relief when the helmet comes off for the hour though, he absolutely loves his hair being brushed.
Thanks again and all the best!
“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.” These are my thoughts exactly.
We’re in week one of adjusting to the helmet, and I have to say it’s breaking my heart. My daughter had surgery 1 month ago, when she was 3 months old, for partial sagittal synostosis. She just got her helmet last week which she will have to wear for one year. She’s such a happy baby usually, but when I put the helmet on, I can’t even put her down. She’s only 4 months old but tries to rip it off with her tiny hands. She has beads of sweat after 20 minutes. It’s so sad.
All this to say that I haven’t been able to build up to the 23 hours yet (3 hours is the longest stretch so far), and I’m completely discouraged. If I knew it wasn’t hurting her, I think I’d be able to stand it. So today I started googling, hoping to find something that would say that she doesn’t need to wear it and that she would be just as well off without it. I found your post instead. It’s very inspiring and positive. You’ve obviously touched a lot of people judging by the comments you are still getting years later.
Thank you for sharing your story.
Chris, I’m sorry to hear you’re having such a difficult time with the helmet. That makes me so sad! Are there any red or irritated spots on her head? If there are, the helmet can be adjusted for that. If everything fits, my suggestion would be to follow the doctor’s guidelines on how many hours a day. The sooner she gets used to it the easier it will be on her and you. I know it’s not easy. I’m praying for both of you! xo
My 6-month-old son just got his helmet a little over a week ago. He doesn’t mind it too much until the helmet starts to hang real low below his eyebrows, especially on his left eye. We’ve had the helmet adjusted to avoid it from shifting down to his eyelids but the problems still persists. I’ve been so frustrated with it from having to keep undoing the Velcro and repositioning his helmet higher above his eyebrows every hour. Has anyone had this problem with their baby’s helmet? I’m concerned the fit isn’t correct for his head because of the loose fit. Also, orthotistsaid she has already noticed an improvement on his head only after one night of wearing it overnight, but I personally don’t notice any improvement. What even concerns me now is that since he’s been wearing it full time (21.5 hours per day) for about a week now, the asymmetry seems to be getting worse and spreading to other areas. Has anyone had this experience as well? Does the shape get worse before it gets better?
I’m struggling seeing his skin get so irritated and itchy from the helmet. He scratches so much when we take the helmet off that his skin gets cut and bleeds from excessive scratching. His head and forehead have small scabs from small areas that bleed.
Karina, this is so hard! Adriano didn’t have excessive scratching. Poor baby. I really don’t think it should be that uncomfortable :( My son’s head did get a little worse before it got better, but not much. I think you need to schedule an appointment with your doctor instead of the orthopedist to get this checked out. I’m so sorry. I hope you find some solutions fast!
Hello,Kate! You said your little one got skull x rays. Do you remember how many per one time? How old was he whe he got them?
Hi Nadia. Adriano got Xrays when he was really young. Maybe 8 weeks? To see if the sutures in his skull had sealed and were preventing proper growth. I THINK those were the only Xrays we got, though his head was measured at the orthopedist’s office (as you can see in one of the pictures) several times after that.
Hi thank you for your detailed diary of your experience. Our son is getting his helmet fitted in two weeks and you have answered all my questions. My partner blames her self because we were told it may of been because she lost her waters early during the pregnancy and he had little space to move forcing him to be induced 3 weeks early. So its hit her really hard. I found the same as you. It was like a massive weight of my shoulders because now something was going to happen. Thanks again
Wayne, I’ll say a prayer for your son’s helmet experience right now. Your poor partner. I can relate to the blame aspect, but as you know, she was neglectful of nothing and would have changed whatever was in her power to change. However, there was nothing she could have done. I hope she too comes to that conclusion. Best to you and yours, Kate
our son Aaron wore a star band to correct head shape as a baby. Ten years on we are still pleased with results. He has a diagnosis of Aspergers , sensory processing disorder and hyper mobility. He attends a main stream school but is experiencing lots of difficulties . When he was wearing his helmet it was a very hot period, i still beat myself up with the thoughts that the overheating could have caused his problems. has anyone else had ASD diagnosis after wearing one !
Thank you so much for sharing your story! Our baby girl just got her helmet and is on day 6. Our story is basically identical to yours and reading your thoughts helped me realize we are not alone in this journey. She is struggling to sleep and I googled “sleeping in a cranial molding helmet” and found your post. I know God lead me to read it and allow it to reassure me. The paragraph that hit me like a rock was the last. I am just now beginning to accept that it is not my fault and I did my best and everything in my power to try and help her but it wasn’t enough and I thank God every day that there are people that can help her and correct this. 😊
Niki, your post give me goosebumps. We like to blame ourselves for everything when it comes to our kids, but this was not your doing. God is sovereign and I’m so grateful that he cares for us so much he puts us in each others lives. Blessings to you, your baby girl and family. xo
Our son is getting his helmet on Friday and I have been beside myself. He’s 5 months old and I feel like I have failed him. I have cried numerous times thinking I should have been a better mom. Thank you for writing this article it has really helped me realize there was nothing more I could do for him. Its so hard when your child is going through something and you can’t really explain to them why. I have no one to talk to about this because me and my husband both don’t know of anyone that has had a helmet for their child so this is new territory for both of us.
My baby is 7 months old and we are on day 3 today. Yesterday he fell asleep in a chair at daycare with it on and he was so sweaty when I woke him up. That’s the part I hate for him :( He seems fine with it but it’s just a pain for me (because it’s big and bulky) along with not being able to snuggle as good with him. I’m constantly worried he will get too hot. Tonight he is supposed to sleep in it so we will see how that goes. Thank you for this post. It helps tremendously to see the light at the end of the tunnel.
I know, Amie. It seems like a long time when you’re in the midst of it, but truly, it’s a short time overall. I’m praying for you that tonight goes well. xo
Loved reading your story! We are just starting out journey with our helmet. So far everything is going well except the helmet smells. It’s summer, we live in Georgia, and our son is hot natured anyway. Any tips to keep the helmet from stinking?
My wife and I have a 8 Month old that just was fitted for a doc band today but a fw months ago when we had found out about it I started to buy her a lot of hats and reading up on the pros and cons to be ready I do know in the last few weeks we can put hats on her and she has no want to remove them hoping this helps with it some.
Hi everyone im a mom of twin girls i immediately noticed the twins flat spots early they didnt get fit for a helmet until 7months of age now at first i stuck with it then i stopped they are 8 months and i read alot about kids growing up with oddly shaped heads and i dont want them to go through being teased or looking different because i was uncomfortable putting their helmets on they have an appointment tomorrow to get them adjustments. Made i decided to stick it through and get it over and done with thanks for your stories it helped me make the right decision for my girls
Thank you for your story. My little man just got his helmet this week and his head looks exactly like your boys-with a side flatness. I appreciate you being candid and am glad we are not alone.
Did you get to keep his helmet after his therapy was fully complete? My daughter turned 4 months old last Friday and she is getting her helmet within a week or so and I’m wanting to know if you were able to keep his after all his therapy was complete. I would love to keep hers to put in her memory box we are making.
Yes! We got to keep it. You’re such a sweet mother :)
Hi, thank you for posting this story it’s very helpful. My daughter got a flat spot on the back of her head from laying on her back sleeping. We put her in a helmet when she was 9 months old and she’s now 10 months and it’s been getting a little better but not a lot. I’m hoping her 11 and 12 month measurements will be a lot better. Do you think with Adrianos, his head grew faster at 11 months?
Thank you for your post! My son is 7 months old and we have just began our helmet journey. My heart is broken in a million pieces. I feel like it’s my fault. Your post is a blessing to me. I don’t feel so alone. I am hopeful that my son is better soon. Thank you again for sharing your story.
Juliette, I’m so sorry your heart is broken. I’m glad I could help you feel less alone, but I know it’s a struggle to blame yourself. Don’t do it. Praying for a speedy recovery for your son! xoxo
Loved your post. My son is was born with torticollis and developed plagiocephaly soon after. He is scheduled to get his helmet next week. I am thankful to have direction, like you talked about, but I am struggling with doubt that the helmet will work on my son for some reason. I know they say that they can get my son from severe back down to about 6mm, but I just worry. I know the Lord knitted him perfectly, but I cant help but want the best for him. including a perfect little round head. His head looks similar to how your son’s did in the earlier months.
Hi Sierra. Yes, I hear what you are saying. I heard a sermon on the radio the other day that said that 92 percent of the things we worry about either won’t ever happen or are things we cannot change. In getting our sons helmets, we tried and gave our best. We did what we could and we can’t control the rest — and worry won’t change that one iota. Believe me, I know this is easier said than done. I can worry with the best of them. But this little fact has helped me quite a bit. I hope it can help you in some way too.
Very helpful. We’re most concerned with how this will impact our daughters sleeping pattern and in turn ours. We both work, so having a full head of steam each day is important. But a short time to sacrifice for something so precious
Hi Dan. Yes, sleep is an adjustment. It will be a little rocky the first week. My best advice is to stay consistent so she gets used to it as soon as possible. Best to you and your little girl. I hope she responds quickly.
I’m so glad I found this! Our son just got his helmet yesterday and I cried that afternoon. I felt ashamed for crying (because there are so many other health issues other children/parents are dealing with) but I’m thankful to know I’m not alone in feeling sad. Thank you for sharing your story and helping me see there is light at the end of the tunnel!
Thank you for sharing your story!! My son is 6 months today and just started wearing his helmet 23 hrs yesterday. He has red marks on both cheeks and the rash has a foul odor. I am so worried. It’s only the beginning. I pray that this will go smoothly.
Poor baby! You should definitely call the doctor if there’s a rash. I pray it goes away quickly and baby boy gets used to it soon. xo
Beth, thank you so much for your encouraging words. It brings me so much joy to know something I wrote gives someone a little hope. Lots of love to you and your baby boy.
Thank you for posting your journey. My daughter is a twin and also has torticolis. I recognize the head shape😉 She will be 8 months on the 29, well I guess the 1st of March since there isn’t a 29th this year! We’ve been doing physical therapy for the torticolis for about 2 months. I’m the one that actually noticed her odd tilt, not turning her head and the flat spot on the back. Luckily the pediatrician referred us and got X-rays. I’m glad yo know you felt it was your fault also. I thought maybe I didn’t get to hold her enough being a twin and everything. We get our helmet on Thursday so this came at great time to read! I’m also nervous about the summer months and sleeping for her. Thanks again for sharing your journey!
We are thinking about a helmet for our little boy. He’s currently 9.5 months old. I found your blog encouraging. May I ask what brand of helmet you chose? I know there are many out there.
Thanks again for sharing your journey. I pray our little guy has good results as your little boy did.
Hi Stacy. I’m glad you were encouraged by the post. I’m so sorry, it’s been awhile I can’t remember the brand we used! We weren’t really given many options, we went with one of the doctor’s recommendations. I’m praying for you little boy too! I’m praying for good and quick results, as well as easy adjustment for all of you. xo
HI! my son is 8 month old and we are picking his helmet up next week. He has a full head of hair ( its really a lot ) I am wondering what your thoughts are on how sweaty you think he will really get? Summer is coming. Did you get to put your son in a pool? I have been trying to look up stories as i was hoping we didnt need a helmet. With him being 8 months old i feel like we waited way to long also and it will make it have to be on longer. I think of 100 things of how i could of changed things. Thank you for your story
I’m sorry you’re concerned about him being hot in summer! You can’t get the helmet wet — at least we couldn’t — so no pool with the helmet. It will be ok. We live in southern Florida and all worked out ok. We’re glad we did it now. I’m sure you’ll feel some relief once the process gets underway. Praying for an easy adjustment and quick healing. xo
My 5 and 1/2 mo old son has plagiocephaly from torticollis just like your son did. We’ve been aggressively repositioning and doing everything we can. His case is moderate and they said we can continue to wait but my husband and I are planning on the helmet (he has his measurements in 2 weeks and gets the helmet in mid-May). I am filled with dread. One thing my son has is misaligned ears. His left ear has been pushed quite far forward compared with his right ear (when you look down from above). Our specialist said the ears aren’t affected by the helmet, just the roundness of the head and forehead but that the ears will likely correct on their own. I’m wondering, are your son’s ears aligned now/symmetrical? One reason I am choosing to go with the helmet is because of the ears but I’m disappointed to hear that it won’t directly help with that. My baby’s flat spot isn’t so obvious or bad but the ears look kind of alarming when looking down from above.
Thanks for your post and all your responses to folks. It has been very helpful and makes me feel a little bit like maybe my family can do this.
Hi Kate
Thank you for sharing your story. My son got the helmet 2 days ago and he is really sweating a lot and forever crying. Am feeling so overwhelmed as a single mum of 2. We are already in summer and am just wondering how my boy will cope.
I have to keep removing the helmet every 1 hour to wipe off the sweat. How should I dress him?:What can I do about the heat?
Hi..my son is 4 months and he will be at his 1st week with the helmet in a couple of days. I’m very optimistic and feeling grateful that this is fixable, all I need is 9 weeks with the helmet ..still waiting to get scheduled for his pt. Praying everyday that everything will go on scheduled. Thank you for your kind words and I’m very happy not to feel alone on this journey.
I’m praying for your son too, Leslie! You have such a wonderful attitude. God can do wonders with that kind of grateful outlook. Praying it goes quick :)
My son is 7 months old and just got the helmet. He has severe brachecepahly. It is very severe. He has needed it for months but insurance wouldnt pay and I couldnt afford it. So he just started wearing it and its 95 degrees where I live everyday.
His skull bulges over his ears and the back is almost completely flat. I saw your sons pics and no offense but my sons is like ten fold more severe. I am worried now the helmet wont work if it didnt even correct your childs head all the way. Im really hopeless now.
Hi Marissa. I’m so sorry to hear all you’ve been through. It’s true the helmet didn’t correct Adriano’s head perfectly, but I don’t think anyone’s head is completely round. I put that in there because I didn’t want parents to think the helmet was a 100 percent guarantee for a round head. At least your son has the helmet now. You are doing the best you can. Try not to worry, it won’t help, though I know from experience that’s easier said than done. It’s in God’s hands now and I’m praying for both of you. I pray that you got it just before a growth spurt and that he will adjust easily to it. I’m praying for your peace and strength as his advocate. And for you hope and encouragement. I wish I could offer you a big hug. Lots of love, Kate
Hi Kate,
Reading your story gave me hope, as we found out yesterday our 5 month old will need a helmet due to “severe” brachycephaly (although of course we think she already looks perfect as is). By the time insurance is cleared and all of that I am sure she will be 6 months by then. I am so frustrated, I am going back to work next week and my husband and I both have very demanding jobs and the last thing I needed to know during my last week with my precious love is that I will have to deal with a helmet on her poor head, sleeping adjustments,heat (it currently averages about 90 degrees everyday here in Irvine, CA) when all I want to do is kiss her amazing head of hair and snuggle everyday. I am already having a hard time thinking about going back to work and now I have to somehow manage weekly appointments and hope that she tolerates it. And we JUST got her to sleep through the night too which is what I so desperately need in order to function at work (being tired is not an option!). We so badly want to say forget it she is fine as is but they of course scared me with the whole risk of bike helmets not fitting later in life or even glasses. She has this crazy mad scientist hairdo and we all love her morning bedhead and now we won’t see it for 10 weeks?? It took us so long to get pregnant our baby girl was our miracle and of course like all moms I flood my phone with her pics everyday and her perfect smiling face and her crazy hair. I love to kiss her head everytime when burping her or holding her. Ugh I am kicking myself wondering if we should have done more tummy time or repositioned her more often in her sleep. I hate how they have created this flat head market, they really have. Honestly with the back sleeping recommendation it’s inevitable. So really I should switch to work in Cranial Tech because that is where the money is going to be for the foreseeable future (sorry I speak out of emotional anger now). Sigh. :(
Diana, I’m sorry you’re dealing with this in your last week with baby before you go back to work! It’s a hard decision to make, but trust me, it’s not the end of the world and will end up being a blip in their childhood. Sometimes now I don’t even remember that Adriano, now almost 5, ever had a helmet. Soon enough you will see her crazy fun hair again all the time and I will say a heartfelt prayer right now that she will adjust quickly and that the helmet will be very effective in a short period of time. xoxo
Hello
Thank you so much for this blog. I can relate on every level!
My daughter is 5 months old and has been wearing the helmet for 3 weeks. She has plagiocephaly resulting from torticollis. The torticollis has rectified itself and we have been discharged from therapy, however Since having the helmet she has reverted to nearly always sleeping on her flat side. I am really concerned that this will have a negative affect on her progress. Did you notice this and if so does it get better,
Thanks in advance xxx
Hi Karen. That’s great news that the torticollis has rectified itself! Congratulations! I felt concerned about sleeping on the flat side, even with the helmet, as well. But because of the helmet, it didn’t seem to affect growth or make it more flat. And we didn’t revert back to any torticollis. I’m praying right now that she naturally starts sleeping on both sides and that her head is progressively more round. Lots of love, Kate
Dearest Kate,
Your story has given me hope for a better day. My daughter Athena is 4 months old and has a sever case of plagiocephaly. We got her helmet just 3 days ago, the first day she was all for it but yesterday … well let’s pray god gives me strength and patience, because all she did was scream and scream and cry until it was nap time. And then she would wake up irritated because she was uncomfortable and couldn’t sleep right. Her naps usually last 1-2 hours and now she’s only napping for 20 minutes. My baby is exhausted and irritated and suuuuper uncomfortable. I just feel so hopeless. My baby has to go through something that I, as her mommy, her protector, cannot control and I just want to cry. I don’t know how to make her comfortable while she naps or when she sits in her car seat. She’s got really chubby cheeks and they just squish down, it almost looks like the helmet is too heavy for her. I don’t know what to do, I feel so bad.
Oh Jane, I’m so sorry to hear how miserable your baby girl is. It’s very hard to watch your child be uncomfortable. It’s just goes against everything mothers are made of! I’m praying hard right now that she adjusts to it quickly and has a major turnaround. I pray that she sleeps well tonight and her head makes great progress filling out in the right areas. I pray for your strength and your heart that’s hurting in this process. In Jesus name I pray these things. Amen. Lots of love from us. Keep your chin up. xo
I really appreciate your story. My boy is going through the same. He is 6 months old and has a 14mm asymmetry. The orthotics Dr said the cephalic index is fine but His right ear sits to far forward and there is a slight flat spot on the right posterior side. We have been seeing a PT for torticollis which has improved. My question is- did the asymmetry with his ears improve? I may have missed that if you did write it sorry. The flat spot is not as noticable as time goes on but when you look down on him it is very obvious that the right ear sits farther forward and also his jaw. My husband does not want to do the helmet but I do. He says it will probably fix itself, the Dr we saw said he will get better on his own but how much? I feel in my gut that the ear placements will not move that much without the helmet. And it is so expensive around $2300. Please let me know if it helped with ear placement. Thank you!!
Hi Whitney. I’m sorry to hear you are going through this with your baby boy. The final straw for deciding to get the helmet were that his ear placement was getting worse. The helmet did end up helping with the ear placement. I wouldn’t say it completely reversed what had already happened, but more prevented the placement from worsening. 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 physical therapy and correction from the helmet helped. I’m praying for your decision and agreement/unity with your husband in this matter right now. Sending you lots of love, Kate
What company helmet did you use? How did you make the choice to use that specific brand?
Molly, I’m sorry, I don’t remember now what company we used. We weren’t given an option at our office.
Please pray for my little one. She is 17 months and just got her thrid helmet. She wore her first helmet from 5 months – 11 months, the second from 11.5 months – 17 months, and we expect her to wear her new helmet until she is 21 months for a grand total of 16 months of helmet therapy. She has always been very consistent about wearing her helmets. At this point, she even brings me her “hat” to put on when she gets dressed in the mornings. She started off with a CVA of 18mm and is down to 12mm after a year, which still puts her on the cusp of the moderate to severe category. She is also on the high end of moderate for brachycephaly and has a noticeable large bump on the left side of her head. We’ve been told the chances of any improvement at her age are less than 50%, but that change is still possible. At this point, all we can do is pray for some kind of miracle. We’ll take whatever we can get.
Kristin, my heart aches for you. What a journey you and your sweet daughter have been through at just 17 months old. I’m on my knees praying for her — and you — with tears in my eyes. Keep me updated if you can. All the love, Kate
Thanks for sharing your story. My sweet 4 month old grandson was breech and has torticollis. He has been going to physical therapy and will be going next week to be evaluated for a helmet. My daughter is just beside herself with worry. He is making great progress in physical therapy but will probably end up with a helmet. My daughter is concerned for his comfort. Your story shows that it possible to get through this and have a happy and successful outcome. Thanks!
Oh I’m sorry, Ann! I’m so sorry I could provide some comfort with this post. He will be ok and this will soon be a thing of the past. I’m so happy to hear he’s doing great in PT. How wonderful! Honestly that’s more important than the shape of his head. But I’m praying for full recovery, quick adjustment to the helmet, a round head and peace for your daughter!
Thank you for this. This is almost exactly my story with my daughter! Thank you!
I read and reread this post multiple times and will most likely continue to do so as we are about to embark on my son’s helmet journey next week. Your post will give me reassurance that everything will be okay and know that “this too shall pass.” Even years later, you are still continuing to comfort, inspire, and allow others to feel like they’re not alone during this challenging time. Thank you for sharing your journey with us. I will forever be grateful.
Sarah, you gave me goosebumps. Saying a prayer for you and your little one now. Thank you for taking the time to write me a little note. xo
If anyone doesn’t do what this mother did, then your child will resent you when he/she realizes that you could have done something about it. I don’t care how much your baby cries or fights back. You MUST force this upon them. How do I know? I am a very damaged person, because my parents were too concerned with their own lives!
I have a flat spot on the rear left side of my header; the front right side of my head has a smaller flat spot. I notice the deformities. Others subconsciously notice it, too. Especially in photos! It is difficult to notice without photos; however, people have admitted that they always thought that there was something off about the way I looked, when they learn about my condition.
I had to have surgery when I was about a year old, because my parents wouldn’t do the stretches. A large portion of my SCM was removed. This caused a lot of problems for me when attempting to strength train in my 20’s. My neck and right shoulder hurt a lot. I have a difficult time going to sleep every night. If I turn my head to the right, I feel like I am being strangled; if I turn my head to the left, I feel like someone is stretching my neck too far.
I write with my left hand, because when I was learning to color my neck, shoulder, and arm would hurt when using my right. As I have aged, I do more and more with my left hand. You can probably imagine how annoying that is. Especially, because I can’t do things near as well with my left hand.
I resent my father. However, I absolutely RESENT my mother the most! I was cursed with this body, because she didn’t want a scar from a C-section! I pay for her narcissism and unwillingness to treat my condition.
This condition was avoidable and/or treatable at the very least. Don’t curse your child! Follow through until the condition is resolved! I wish that I had had a mother like Kate! My life would have been a lot better!
Thank you for sharing your journey with us. My 5 month old daughter starts her helmet journey later this week. She was 6 weeks early (so her adjusted age is 3.5 months) and was also diagnosed with torticollis and prefers her right side. Her torticollis slowly getting better but it’s very helpful to know that you did PT for that long. We’ve been going to PT for about 3 months now. I just want what’s best for her and I know the helmet helps so much more than being cosmetic. I know that God sent us on this journey and we are ready to take it on with His grace and guidance!
Hi Lexie. I’m so impressed and inspired by your attitude and faith! I’m praying right now that it will be an easy adjustment for baby and you. I pray it will bring you closer to God and increase your faith. I pray she is fully healed and all signs of torticollis are gone quickly! In Jesus name, Amen. xo
Hi Kate! Thank you so much for your positive story. My son is 5 months old and will be getting his helmet in a couple of weeks. He is still in an infant car seat and I am worried about his head not fitting in the car seat with the helmet on. Do you have any suggestions? I keep searching the internet with no answers. Any light you can shed or help that you have would be greatly appreciated.
I’m so glad your baby is through his helmet experience and that it was a success for him :)
-Christie
Hi Christie! I’m sorry you have to go through the helmet experience, but happy you have the option :) I did not have any problems fitting my son in the car seat with the helmet.
Thank you for sharing your experience. My 4 month old baby just got his helmet and getting used to the sleeping on it was/is very hard. Ivan (my baby) used to sleep from about 11pm til about 9am non stop and with helmet we stayed up until 4am first 2 nights and woke up around 8. This is just hard to see. I have been bathing him every single night and keeping him in the water longer than usual does help significantly, somewhat back to his sleeping schedule. The helmet though goes forward and won’t let him open his right eye called the specialist and was told as long as it’s not pink it’s ok his head will shape into it! Did that ever happen with your baby?
Hi Ariana. I’m so sorry to hear that Ivan is having a hard time adjusting to the helmet. It also makes me sad for you, because as mothers we want to comfort them. Try to remember that what you are doing now will benefit him for the rest of his life. The helmet blocking him from opening his right eye is concerning. Is it just when it moves forward or all the time? Adriano’s helmet was big at first and he did grow into it — faster than you think!
Starting day 1 tomorrow with our helmet. Praying it goes well. Thanks for your encouragement. So much. It’s hard not to feel guilty. But what is true is it’s not fault. Now it’s time to help the little guy. I may be back to ask more questions if the arise. Thanks for your sharing your story.
I hope it’s going ok the first day with the helmet, Sarah. I’m praying for a smooth transition for both of you. xo
Thank you for sharing your story! My daughter gets her helmet next week and this brought me a lot of comfort! Hope you and your family are doing well!
Praying for you and wishing you the best! I hope she adjusts quickly and doesn’t have to wear it long. xo
Hi Kate
Fantastic post thank you! My sons story is identical to yours – severe flatness to side of head, stiffness of neck needing physiotherapy and ear asymmetry. I’m currently in week one so very early days.
Did the asymmetry of your sons ears correct fully after helmet treatment finished? Ie are they now positioned in the same place on both sides of his head? or are they still a little off centre?
Thanks
Thank you for providing such information. This is very generous of you providing such vital information which is very informative.
Thank you so much for this. I am so sad that my daughter will need a helmet. I feel like I failed her. She plays with her hair to fall asleep and I can’t imagine how she will sleep now. However like you said, their are way worse things out there and I am blessed to have a beautiful baby girl. I hope to find your strength but I know it’s ok to cry too.
Oh Alana, I’m sorry you’re going through this right now. I can read what a good and caring mother you are! You did NOT fail her. I know you know that, but want you to hear it anyway :) Praying right now it’s an easy transition and not too many tears for either of you. Lots of love — Kate
My son has been in a helmet for about 6 months now, he just turned one yesterday. We were blessed with an easy transition into helmet wearing. However, he has been pulling the Velcro off his helmet and pulling out the foam spacer which is a choking hazard. We ended up taking the foam spacer out but I have no idea how to stop him from pulling on the velcro, do you have an suggestions to keep him from doing this or have you heard of other people dealing with this?
Hi Roberta! I’m glad you had an easy transition. About the velcro, I’m not sure what to suggest. Could you add another velcro strap that went the other way (vertical) as well as the normal horizontal position? That way he’d have to get through two?
Hello,
I’m really struggling with the decision to put my baby in a helmet. It’s not considered severe but it would be noticeable when he is older.
He’s currently 9 months old and would be having it just before he is 10 months. He’s suddenly started meeting his milestones and is happy. I feel I should have trusted my mummy instincts and pushed harder on this earlier with the doctors and family.
I know it would be our personal decision but it would be great to know how any parents managed this with their child going nursery. The previous posts about development delays have added fear in the decision making.
Thanks,
I’m sorry you’re having to make this difficult decision. As you say, it’s a personal choice. For me, I decided that if we just went ahead and did it I wouldn’t regret it. It is hard on baby the first two weeks to get adjusted, but he will. It becomes normal to them and soon enough it’s over. Praying for your decision making. There’s no right or wrong answer. Lots of love — Kate
Hi, thank you for your inspirational story. Our son is being measured today and we’re still in two kinds what to do as we want to give him the best chance but have been slightly out off by an article in the British Medical Journal that did a study to show equal results with those that did and didn’t wear helmets (our thoughts are everywhere at the moment!) But one thing we’re interested in is the time after the treatment as. How is your son now a few years on? Have you seen any side effects that may not have been there if left alone? Sorry it’s a direct question but so far we have only been guided by useless GPS and a PT who are cranial specialists so are attempting to contact Great Ormand Street. Thank you again.
Hi Matt. I’m sorry you’re going through this. We went back and forth too before committing to the helmet. And I have to say there were quite a few hours logged with that thing that amounted to nothing! So I’m not sure if there would have been any side effects if he hadn’t had the helmet. What concerned me more than the flat spot were his ears were sort of shifting position as well from his torticollis. That is what led us to go ahead with the helmet in case there was even a chance it would help. He’s 10 now! And you’d never know he had those complications as a baby. I wish you all the best in your decision and your baby’s health!