I wanted to share our helmet journey with Otis. I get a lot of questions from people about his helmet and would love to take the time to dive into what led us to helmet treatment. I want to preface this that I am not a doctor and just sharing our personal experience and the things I have learned along the way. If you have any important questions please feel free to talk to your doctor.
When we took Otis for his 2 month checkup, our doctor noticed his head was looking a little bit flat. She encouraged us to do more tummy time and that it would correct itself with time. After leaving that appointment Blake and I couldn’t stop staring at his head and could really visibly tell how flat he was. As a parent of a newborn, I feel like the last thing you are noticing is a flat spot on your child’s head because at this point you are just doing your best to stay awake through sleep deprivation and keep your child alive. We truly didn’t even notice until the doctor told us about it and then it’s all we could see. I talked with some of my other mom friends to see if this had happened to them and quite a few of them said they dealt with some flatness. Some of their flatness was due to muscle tension and they did physical therapy and were able to solve the flatness with no helmet treatment. So at this point, our doctor hadn’t suggested any more in depth treatment but my mama instincts kicked in hard and I knew I wanted to be proactive about this. I took it upon myself to do some research and ask around for any recommended children’s physical therapists. We found one that came recommended from a few friends and I quickly called to schedule a consultation with them. Our first appointment was when Otis was about 2.5 months old.
PHYSICAL THERAPY AT 2.5 MONTHS
At our first physical therapy consultation, the PT instantly noticed his muscle tightness. While she is not a doctor, she is trained in seeing these intricacies in the muscles and diagnosed Otis with Right Sided Torticollis. We started with weekly appointment to learn different stretches to help with his muscle tightness and range of motion. Because of this tightness, it was causing him to favor turning his head to one side and in turn was causing more flatness on that side. We did these stretches at home 5x a day and then when we went in for appointments the PT would stretch him out during our appointment. At the end of our first appointment, the PT also gave us a referral to a cranial technology company called Hanger Clinic. She suggested that if we were worried about his flatness that it wasn’t a bad idea to schedule a consult with them as they would be able to take head measurements and let us know how severe his flatness was to give us some treatment plan options.
CRANIAL SPECIALIST APPOINTMENT
We went to the cranial tech when Otis was 3 months old. At this appointment, they took a 3D scan of Otis’ head shape (totally painless process!) and were able to compare his measurements with standard head measurements for other babies his age. This then gave us an idea of where he fell on the spectrum of flatness. His initial scan came back putting him in the 99% flatness. A combo of plagiocephaly and brachycephaly. These are more of the correct science terms but I will refer to it as flatness. Typically the normal range is 90-95% so his percentage put him on the edge of moderate to severe flatness. Because of this, she suggest that we do everything possible to keep him off the back of his head for 1 month to see if we would be able to help correct some of his flatness through keeping him off his head and then we would rescan in 1 month to see where we were at.
THE 1 MONTH TEST
This 1 month was a huge test for us. We needed to do our best to keep Otis off the back of his head as much as humanly possible. This would then let us know if we were able to see any improvement in his flatness, if it would stay the same, or if it would get worse. Otis was currently still sleeping in a swaddle and she suggested to transition out to encourage further development and rolling. So we transitioned out of the swaddle (you can read about that here) and started to encourage and help Otis to learn to roll both ways. Once he was rolling both ways, we transitioned him to his crib and allowed him to naturally roll onto his stomach for sleep. This would also take pressure off the back of his head when he was developmentally ready to sleep on his stomach. For that month, we put away all our swings and baby gear. Blake and I are lucky to be able to work from home and would wear him in a carrier (this one or this one) for every single nap he took to keep the pressure off the back of his head. This was ALOT OF WORK. We also used a positioning pillow for some supervised naps to gently have him lay on his side. He would need to be almost a sleep in order for us to place in him in this position so it was tricky to use this pillow. We basically tried everything we possible could. We also got this chair for him to sit in since we could no long put him in any of our other gear.
CRANIAL APPOINTMENT 2
This was a HUGE appointment for us. We were excited to see the scan and what progress we had made with all our efforts to keep him off the back of his head. We scanned Otis and got some bad news. His flatness had gotten WORSE. HOW WAS THIS EVEN POSSIBLE?! IT just goes to show that you could do everything right, go above and beyond, and in the end, it is not something you could have ever prevented. His newest head measurement (cephalic ratio) of 101% put him in the severe category. I have to say that our cranial remolding specialist is truly a kind woman. She reassured us that his flatness was of course not our fault and she applauded our efforts to try to help. She was very open to us in explaining what the process would be if we were to chose to do helmet treatment for Otis. So we scheduled our next appointment and went home to make the final decision about whether we would be getting Otis a helmet.
We left and I am pretty sure I was crying in the car. A wave of emotions hit me. I was so defeated that our efforts actually did NOTHING to help Otis. We were trying with everything we had and it was just so discouraging to see no progress and for his flatness to get worse. I was then emotional thinking about the journey ahead. How would adjust to the helmet? How would we? Would he be happy? Such an emotional day. It was made worse when we got home and called our insurance company to find out that there is an exclusion in our coverage specifically for cranial helmets. So our insurance would cover no part of the cost even though he was in the severe category where they recommend treatment to correct it. The universe has a funny sense of humor sometimes. Let me tell you. They estimated the cost of our helmet to be around $2000. It’s WILD that insurance doesn’t cover something like this. Because of his asymmetry we decided we would pursue treatment. It’s a very personal decision that I know is not made easy by the outrageous cost of this. It’s not always about aesthetics because sometimes with severe asymmetry it can cause other growth issues in the jaw etc. So we were 100% committed to helping our little guy with his flat head.
During this time period we continued with our physical therapy once a week and doing stretches at home. Otis was continuing to improve every week which was very positive news.
CRANIAL APPOINTMENT 3 // Helmet Measurements
This appointment was a pretty quick one. We came in to get Otis’ final head measurements with the 3D scanner so that they could build his custom helmet based on those measurements. The specialist also gave us some handouts on his schedule wearing it and how we would clean it etc. The goal was to get Otis in his helmet before he turned 5 months and we were going to hit that goal.
CRANIAL APPOINTMENT 4 // Helmet Fitting
It was Otis’ big helmet day!! I was pretty nervous going in that day. I kept snuggling Otis’ little head… knowing that soon I would not be able to just cuddle and kiss him in the same ways. I started to get really, really sad. Blake and I took Otis in and she brought the helmet out to show us. She sat and gave us a tutorial on how to take it on and off having us both practice before we left. What was amazing to see was that while he protested a little bit putting it on initially, he didn’t seem to be bothered by it much when it was actually on. We checked the fit to make sure it looked good and before we knew it we were on our way. Our little man had his helmet. I sat in the back of the car with him on the ride home. Eye welling up with tears. I have to be honest that this was likely the most emotional day of the process for me. I think the realization that this was going to be affecting our everyday and be a part of our lives for an extended period of time was really all sinking in for me. I just wanted him to be happy. That is all I wanted.
You never know how they will react to a change like this so Blake and I were very curious if he would continue his rolling back and forth wearing the helmet or if it would stunt some of his abilities while he was learning to adjust to the helmet. We put him on his play mat with his toys and he INSTANTLY rolled over. Guess there were no problems there for Otis. I feel like I could instantly sigh a little bit of relief. The shocking thing about it all was that Otis just seemed completely unphased wearing the helmet. Yes, getting it on and off created a little bit of a fussy moment but all in all, he was completely fine with wearing it. Most importantly, he was his same happy self. Smiling, laughing, and loving just like he did before it. So many people told me that it would likely be a harder process on me than it would be for Otis and that is 100% true. Babies are so resilient and it was amazing to see that first hand. Otis was prescribed to wear his helmet for 23 hours a day. It could be taken off for 1 hour a day to bath him and simultaneously clean the helmet during the time off. We weaned him into the full day wear. Below is his schedule we followed to wean him into wearing it to help avoid any skin problems.
Day 1 alternating 1 hour on, 1 hour off // OFF for naps and night sleep
Day 2 alternating 2 hours on, 1 hour off // OFF for naps and night sleep
Day 3 alternating 4 hours on, 1 hour off // ON for naps and night sleep
Day 4 alternating 8 hours on, 1 hour off // ON for naps and night sleep
Day 5 alternating 23 hours on, 1 hour off // ON for naps and night sleep
FULL TIME WEAR
We did notice that during his first week of wear he was extra sweaty which is totally normal. Their body is just adjusting so typically they can get warmer wearing the helmet and we dress him accordingly. Otis seemed to be unphased by wearing it which was the best news ever. His sleeping was also pretty much on track with a few hiccups. He was a little bit fussier than normal for the first night but pretty much still slept through the night for us. So all in all the helmet was not causing him any problems.
About 1 week into full time wear Otis did get some heat rash on his head from the helmet. This is very normal and we were easily able to treat it with baby aquaphor and hydrocortisone cream. After that initial rash flare up, he has done pretty well skin wise and hasn’t had much further irritation. Otis does have eczema so his skin is occasionally bumpy from that but not from the helmet.
We still kept our bath schedules to every other day as to not irritate his skin with any new routines. So either during bath time or for his 1 hour off, we scrub the inside of the helmet with rubbing alcohol on a cloth and then let the helmet air dry during that time as well. If we are more in a rush we might use a hair dryer and always make sure his head is not wet when the helmet goes back on. The main key is to keep it as dry as possible.
For the most part, the helmet is pretty easy now that we are in the swing of things. Of course getting certain outfits on can be a funny challenge. Or soothing a fussy baby who i smashing their helmet into your face. It can be a strange new feeling to get used to but now, the helmet is part of him and when I snuggle up next to his head, I know he still feels that love.
FIRST PROGRESS UPDATE
1 Month into treatment we went back to get his first progress scan. WE WERE EXCITED!!! We could already see a visual change so we were excited to dive into the numbers. Otis was down to 97% from 101%!!!! WILD. I think both Blake and I looked at each other and smiled so big. After all the PT, after everything we did, the big decision to do helmet treatment… it was working. I could cry happy tears knowing that everything we were doing was working. It’s wild to see how their young skulls are growing and changing so much at this age. I will of course keep you all posted of Otis’ progress as we go through the rest of his treatment and update you when we finally finish treatment and what his numbers looked like. We each have a very unique and personal journey with this kind of treatment and I want to thank all of you for your kind words of encouragement and love toward Otis and our family as we have gone through it.
YOU CAN DO THIS
I get so many questions, comments, and love for Otis and us as we have gone through this treatment and openly shared it on social media. I think that something that has been so special having this platform is being able to bring light to so many taboo subjects. Sharing our IVF journey was just the beginning of being able to use my platform to connect with so many of you to know you aren’t alone. It’s been one of my most important, personal, and fulfilling things I could ever do with what I have created here. Moving into motherhood from that experience, it’s clear that so much is not talked about. Everyone feels and experiences things differently which I 100% respect. We all mom differently, and there is one unifying thread between us all no matter our parenting styles: we f*cking love our kids so much and would do anything for them. While the helmet process was an emotional start for me personally, I thought that sharing our experience might help empower some other mamas out there maybe struggling with the idea of it. There are so many things about motherhood that test you. And I just want to let any mamas out there that might be worried about their babies head flatness to feel empowered to trust their mama instincts (like I did!) and know if you do have go down this path, YOU GOT THIS. And so does your baby. Because Otis has your back too. Because if you see the smile on his face in these photos, you know he is a happiest baby around. And he’s sending a little smile to any of you that might need it today.
FREQUENTLY ASKED QUESTIONS
Here are some FAQ we have gotten about the helmet that hopefully can answer some of your questions. Feel free to always email me any questions or leave a comment on this blog post.
What age did he start PT? 3 months
Plagiocephaly or brachycephaly? Combo of both
Do you think restricting the baby’s movement using the Snoo was a contributor? No! I did actually ask both my DR, PT, and Cranial Specialist about this. Even in the snoo baby has the full range of motion moving head from side to side. Otis’ issue was his torticollis and the bassinet had nothing to with that. But this is a great question because I thought of this one as well.
Is it something you could have prevented or was he born that way? There is nothing we could have done to prevent the muscle tightness that contributed to his head flatness. But because of our commitment to PT, Otis has graduated with a full range of movement and motion.
Is he wearing the helmet for cosmetic reasons or was there some asymmetry? He does have asymmetry. It is typically known to be treated for cosmetic purposes especially for boys whose head shape is more seen if they have shorter hair etc. But asymmetry can also have the potential to affect other things. Again, I am not a dr. Just sharing what I have learned through this process and helmet treatment is not right for everyone. But Otis’ flatness was in the severe category in comparison to the norm so that is a big reason we decided to do helmet treatment.
Did his doctor recommend helmet treatment? Or did you take him for a consult on your own? Our PT recommend we see a cranial specialist. And we went to see a PT on our own. So basically this whole chain of events was started on a mama hunch that I wanted to look into his flatness further despite my doctor thinking it wasn’t a big deal.
Insurance didn’t cover any of it? Is it super pricey? NO! Treatment for us is around $2k and we have already appealed to our insurance company but it is not looking good. It’s so incredibly expensive but we are committed to Otis’ treatment.
How old was he when he got the helmet? 5 Months old
Does the helmet hurt him? Not at all! He is 100% the same happy guy he always is.
Does it affect his sleep at all? No! He’s a great little sleeper and didn’t really have any issues sleeping through the night with it on. Day 1 was a little fussier than normal but overall no issues with any of his developmental achievements to date.
Why do so many babies have it now? Seems like a new issue. The current standard for safe sleep to reduce the risk of SIDS is to place babies safely on their back in their cribs for all sleep. For this reason, babies are spending so much time on their back and its pressing on their growing and molding skull. They believe that his is why there is such an surge of flat spot issues. Years past babies were sleeping on their bellies so these issues were not as prevalent. Again, I am not a DR but this is what I have researched and been told by medical professionals.
How does he like the helmet? Does he get fussy about wearing it? Not at all. He could care less about the helmet. 100% unaffected by it.
Do you get funny looks from people when you’re in public with him? Sometimes. But I think it all stems from a lack of understanding. Sometimes people ask and it’s as simple as letting them know we are just fixing some flatness. It also is a great reminder to be kind to others. The helmets tend to be tougher on the parents than the babies. It’s an emotional process when you are doing your best to be a great parents and take care of your child. I know some people might not feel as comfortable as I do with sharing all of this and that is ok too. Just know that its not your fault if your baby has some head flatness. Be kind to yourself and know that Otis has your back 😉 I am so proud of my little helmet man.
For how many weeks/months will he wear it? They estimated 2-4 months based on his severity but it all depends on his progress so we will have to wait and see. He wears the helmet 23 hours a day and we take it off for 1 hour a day for bathtime and to clean the helmet with rubbing alcohol.