Wren graduated from her helmet a few months ago, but I’ve received several questions on Instagram about her and her helmet, so I figured I would put together a blog post about Wren’s Plagiocephaly and Helmet Journey and talk about how we went about getting a cranial orthosis helmet for her, some issues we encountered along the way, the financial aspect, how it affected her, and her results.
Disclaimer: I am not a doctor and the words and other content provided in this blog, and in any linked materials, are not intended and should not be construed as medical advice. I cannot suggest that you use or not use any products discussed. If you have concerns about your baby’s head shape, please consult the advice of a medical physician.
First of all, what is plagiocephaly? It’s an abnormal head shape in infants where the head is flat on one side, the head appears skewed to one side when looking from above, and one ear is possibly more forward than the other. Plagiocephaly can be caused by positioning in the womb which is what most likely what happened in Wren’s case because plagiocephaly is common among multiple birth because space is so limited. She was my breech baby nearly the entire time. She maybe flipped once, but usually she was head up near my right ribs.
Other causes of plagiocephaly include:
- premature birth because preemies have softer heads and spend time in the NICU
- torticollis, which is abnormally tight neck muscles that can limit head movement and cause the head to tilt and turn to one side and as a result, babies’ heads settle into the same position resulting in a flat spot
- carriers and convenience devices because babies spend more time than ever in car seats, rock n plays, swings, etc.
- back sleeping which is recommended by doctors to reduce the risk of SIDS.
If your baby has plagiocephaly, remember, it is not your fault! Continue to have your child sleep on their back as it is the safest way to reduce the risk of SIDS and don’t feel guilty for using a convenience device, etc. Plagiocephaly is treatable and even if your child has a slight flat spot for the rest of their lives, it’s not the end of the world.
I first noticed Wren’s flat spot when she was a month and a half old (near the end of February). I was photographing both babies and she turned her head to the side and that’s when I saw it. I then looked at her from the top down and noticed the flat spot. Of course, I promptly emailed her pediatrician who’s nurse basically just said bring her in during her regular appointment or make a sooner appointment if you feel the need. So, we went to her regular pediatrician’s appointment, and he suggested repositioning and tummy time (two things I had already known about and had been doing), and these “donut pillows.”
Well … repositioning, more tummy time, and the donut pillows didn’t work. I saw no improvement and actually thought it was getting worse. So I set up an appointment with Cranial Tech in mid-April to have Wren’s head scanned and get their opinion. We decided to take Hank along, too, as a sort of test case because we didn’t feel like he needed a helmet and we wanted to see what these for-profit places would say about his head.
Why fix it at all? For us, it was mostly about Wren’s ears and how misaligned they were. Her father wears glasses and if for some reason she needs to wear glasses and her ears didn’t straighten out, I was afraid she would have issues wearing glasses in the future. There are other possible issues, too, such as jaw misalignment that causes a crossbite or underbite or possible issues with sleep apnea.
At Cranial Technologies, we first discussed the babies’ medical histories and then they did scans of the babies’ heads and sent them to their main image processing center to be analyzed. This process takes 20-30 minutes (with two babies). You can see the scanning in the above and below photos (please excuse the low res iPhone photos). The light “sock” mask that goes on their heads allows the camera to better capture the head shape so hair isn’t messing it up. I was asked to hold both babies in a certain way and it was really quick taking the photos.
Of course they recommended helmets for both Hank and Wren. We were surprised at the recommendation for Hank’s head, but after seeing the scans and examining his head, we could see that he had a slight flat spot as well. I then set up an appointment with Hanger Clinic the next week for a second opinion. We didn’t even have Hanger Clinic evaluate Wren (I mean, I could see her flat spot with my own eyes), but they also recommended a helmet for Hank. Also, I just wanted to note that Hanger didn’t do any scans at the initial consult, they simply did an examination of the head along with some manual measurements.
I then learned that in order to get a helmet, you need a prescription from a doctor. So I had to make an appointment with the infant cranial pediatrician, of which there is only one with Kaiser Permanente that sees babies under 5 or 6 months old in the LA area. We were able to squeeze into an appointment with both babies to see her the first week of May. She examined both Hank’s and Wren’s heads and she told us that both of their heads would likely self-correct on their own if we were extremely diligent about repositioning and keeping them off the backs of their heads. Did you catch that?
She said that both babies heads would likely self-correct on their own!
However, she ALSO said that she realizes that we have twins and that doing repositioning and holding them more is extremely difficult with two babies and that we were likely already doing the best we could, so she recommended getting a helmet for Wren in order to reshape her head and that Hank’s was not that severe and would likely self-correct. She also said that if Hank’s head was not rounding out in the next few months as he started to move around more, that we could always revisit the idea of helmeting him as well.
So then we had to make a decision between Cranial Tech and Hanger Clinic. Our insurance didn’t cover the orthotic cranial helmet, so we knew we would be paying out-of-pocket and both facilities were about the same price (I discuss the financial aspect in more depth below) so that wasn’t a deciding factor. And both facilities had pleasant and informative staff. The factor that decided it for me was that I asked the orthotist at Hanger Clinic how many other helmets he had done (because Hanger also specializes in other prosthetics and orthotic devices aside from helmets) and he told us that he had only done one other helmet using their current scanning technology because he hadn’t liked their previous scanning devices. Well, that kind of made the decision for me. I liked that Cranial Tech specializes in helmets and that is what they do day in and day out and I didn’t want Wren to be this Hanger Clinic orthotist’s guinea pig with his second helmet using their new technology. Plus, I didn’t love the parking lot for Hanger (It’s silly, but as a twin mom who would be going once a week to an appointment, this was factored into my decision.)
Also, please note that while I had heard that many people have needed to purchase second DOC Band helmets from Cranial Tech and that the STAR Band helmets from Hanger Clinic allow for more growth (maybe because there is more foam to carve away, I’m not sure), we did not experience this and I cannot advise on it.
Life got a little busy, but I finally made the appointment and got Wren into Cranial Tech for her initial helmet sizing scan on May 22nd. It took a little while to do the scans since they had to redo them because they wanted to make sure they had a good image to work with and I was happy they did – I would rather take longer to get a good scan and have the helmet be right than waste a week in production and get a helmet that didn’t fit. This time, they put a put full head mask on Wren’s head, but she was totally able to breathe though it and a CT employee held Wren in place to make sure they held her in the correct position for the best photo.
We went back in on May 31st and she was fitted for her helmet. We were shown how to put it on, they made sure we were comfortable with it, we went over cleaning instructions and the wearing schedule, and then we were off!Wren took to the helmet VERY well. My father-in-law often repeated, “I am amazed at how well that little girl tolerates that helmet!” She wore it off and on for a few days while we did skin checks, but she didn’t wear her helmet overnight until the night of June 3rd.
(Side note: I think Cranial Tech would have preferred her to have slept in it overnight a night or two sooner, but I wasn’t in a rush and I wasn’t going to allow it to stress me out. There are so many things to stress over as a mom and as a twin mom and I decided early on that Wren’s helmet was not going to be one of them.)
After wearing the helmet overnight, I removed it in the morning and examined her head and it was fine in the morning, but in the evening of June 4th when I removed the helmet for it’s “one hour a day removal” for her bath and to clean it, I noticed she had a bad rash and some red spots. The rash and the red spots did NOT go away in one hour and I had noticed that the helmet smelled funky and had some yellowing. I did NOT put the helmet back on her that night.
So we went back into Cranial Tech the next day on June 5th where I spoke to the orthotist about her skin. She asked if the helmet had smelled or yellowed and I said yes, but that I had been cleaning her head and the helmet as instructed and keeping her cool (she only slept in a diaper or a short-sleeve onesie at night). The orthotist responded that it was likely just a fungal issue which was common, that Los Angeles was having a heat wave, and that the first few days of wear are an adjustment for the baby’s skin – basically, her skin needed to get used to the helmet. She advised to leave it off the rest of the day and for the night, keep Wren’s head clean and dry, and see if it cleared up. If it didn’t, I would need to make an appointment with Wren’s pediatrician to get some skin cream to clear it up before continuing with the helmet.
It cleared up.
And then I was extra vigilant in cleaning Wren’s head and the helmet and keeping her cool and sweat-free and we didn’t have any other issues.
I cleaned Wren’s helmet per Cranial Tech’s instructions: clean it every day at bath time with 70% isopropyl rubbing alcohol only. Any higher alcohol percentage could burn Wren’s skin and using soap and water could ruin the helmet’s foam. I would then allow it to dry during Wren’s bath time (where I would wash her head with shampoo and water) and then after her final bottle it would go back on before bed.
Please make sure you follow your helmet manufacturer’s instructions because all are different and you don’t want to ruin such a costly device.
We had weekly growth appointments where the Cranial Tech orthotists would carve away the helmet’s inner foam to allow for more room for her head to grow in the areas that it was flat. We had one week where her head grew A LOT! I can’t remember the exact numbers and details, but basically the orthotist said that most babies had an overall growth of X mm and that Wren’s head had grown half that much in ONE WEEK. So we obviously were lucky to get her in there before a large growth spurt which is great!
How did the helmet affect her? Like I said, she adapted to it really well and I never really noticed that it bothered her. However, she wasn’t the best sleeper while wearing the helmet. She often woke up during the night. I think it was because the helmet affected her ability to roll over. Hank had been rolling over and sleeping on his belly for several weeks, but the helmet just hindered Wren’s roll, so she was still sleeping on her back, crying in the middle of the night, and therefore waking me up. After she graduated from the helmet, she started rolling over within a few days, started sleeping on her belly, and was a better sleeper.
Wren officially graduated from her helmet on July 10th even though she stopped wearing it the day before because she got her 6 month shots and since she usually runs a low-grade fever when she gets her shots and there was a major heat wave in Los Angeles, I didn’t want her to overheat, so I simply took it off her a day early. She wore it for almost 6 weeks total.
Here are Wren’s before and after scans so you can see the difference and/or compare your own Cranial Tech initial scans.
Are we happy with the results? Yes! While she still has a slight flat spot which the orthotist said she will likely always have, it will be covered with hair, her flat spot is nearly undetectable, her face is more symmetrical, and her ears are aligned! I was surprised that it only took 6 weeks, but I was thankful that it was only 6 weeks because it’s hot hot hot here in Los Angeles during the summer and her helmet was keeping us inside in order to keep her from overheating.
And here are Hank’s first scans and then we had him scanned at the same time as Wren’s “after” scans just to see if he really did round out and self-correct. With Hank’s scans below, you have to compare where the blue arrow moved to from the left side report to the right side report as they didn’t do a “before and after” like they did for Wren.
Alright, quick chat about the financial aspect of a helmet. Most helmets cost about $2,500 out-of-pocket. It’s expensive. It covers the helmet itself as well as all of the office visits for the growth checks. I already said that our insurance did not cover the helmet. Some insurance coverage does cover, but other plans do not and then you have to pay out-of-pocket.
I will say that we got a little bit of the run around on information when trying to determine whether we were covered or not. Cranial Tech told us we were not covered, but that Kaiser Permanente members were sometimes covered through Hanger Clinic. Hanger Clinic wouldn’t run our insurance until we had a prescription, so when I got the prescription I asked the doctor if our insurance covered it or not. She said no, but that we could petition and see if perhaps it would change; however, it would take 10-14 business days to do that and then it would only be through Hanger Clinic in three specific locations in Los Angeles, all three of which were a 45-90 minute drive for me door-to-door in traffic rather than the Hanger Clinic that is only 10 minutes up the street from us. Due to the weekly growth appointments, I did NOT want to drive 45-90 minutes one-way each week with two babies, so we first made the decision to just pay out-of-pocket with either CT or Hanger, and then we decided to go with Cranial Tech (for my reasons I discussed above.) I believe there are payment plans and you can also ask for a twin discount if both twins are getting the helmet. There is also a discount if you pay the entire fee up front.
I didn’t get Wren’s helmet decorated with vinyl because sometimes you have to send it out for several days so they can apply it or I would’ve had to drive somewhere to get it done and I just didn’t have time for that. I also heard that they sometimes use heat to apply the vinyl and I didn’t want to warp or mess up the helmet just for some fun decorations.
There are decals that you can order online (Here’s a cute Etsy Shop or Bling Your Band), but I didn’t have time to order those either, and honestly, by the time I got the velcro and the bows put on her helmet, she was nearly out of it!
- You are your child’s advocate! When I learned that we needed a doctor’s prescription, I was worried that the doctor wouldn’t give it to us, based on some other stories I had read on the internet. I had prepared myself to fight for Wren’s prescription that day if I needed to, but it turned out I didn’t need to because the doctor understood our challenges due to having two babies. However, if I had only one baby, it’s likely she would have told me that it would correct on it own if I was diligent with repositioning and tummy time, so if I had only one, I would have needed to be honest with myself and the doctor on whether I was doing all that I could or if I needed that prescription.
- Wear the helmet 23 hours a day! We were extremely diligent about Wren wearing her helmet 23 hours a day. I removed it for one hour for her nightly bath and bottle where I cleaned the helmet per the given instructions and washed and dried her head. I also took it off here and there for 10-15 minutes when I was taking some photos because I didn’t want all of her 5-6 month photos to be wearing a helmet. And then I took it off a few times when we went to a park or an outdoor museum because it was too hot and I didn’t want her to overheat or develop a fungal infection. And then of course, I took it off of her a day early because I knew she would run a fever after her shots PLUS we had 110 F degree heat wave weather that week and it was HOT. Other than those few times, she wore the helmet 23 hours a day.
- Keep the helmet clean and dry! Keep the helmet and the baby’s head clean and dry. I discussed this all above. Clean it as you were instructed to clean it as any other advice from a different helmet company could ruin your helmet.
- Remember, an orthotist is not a dermatologist or pediatrician and they are not qualified to address skin irritation issues! I followed the advice that Wren’s orthotist gave to me: see if her skin irritation cleared up that day and that if not I would need to visit Wren’s doctor to resolve her skin irritation with a prescription ointment. If your baby has a red mark or spots that do not go away in one hour, leave the helmet OFF. Make appointments to see your orthotist and pediatrician and coordinate a treatment plan.
- Ask questions! Ask how many helmets the orthotist has done, ask about the possibility of a second helmet, ask about the financial commitment and any possible discounts or payment plans. Be sure to get the opinion of someone who has no money in the game. Both Cranial Tech and Hanger Clinic are for-profit facilities so they have money in the game and are going to recommend a helmet. Talk to your pediatrician.
- Put a bow on it! Obviously you can decorate your child’s helmet however you like with decals or bows, but if you need advice on how to attach a bow: affix about 1 inch of adhesive Velcro onto the helmet with both sides of the Velcro attached to it. Then affix an alligator clip to the bow and slip the alligator clip between the two pieces of Velcro to hold the bow in place. Here’s a great buy on Amazon for 40 bows for $9 with alligator clips. Also, note that the other twin will be very interested in the bow and pulling it off!
- Don’t worry about what others think or say! I didn’t have anyone say anything to me about Wren’s helmet. I only had one guy give her a weird look. But then again, we live in Los Angeles where I think people tend to keep comments to themselves and aren’t overly friendly. But I did read on the internet where some moms heard nasty or ignorant things being said. To be honest, I thought I would care what others would think that my daughter was wearing a helmet, but once it was on, it didn’t bother me at all. I was getting my daughter the best care possible for her and I didn’t care if anyone looked at her funny.
- Correct a flat spot without a helmet! Want to learn more about how to correct a flat spot without a helmet? This mom’s blog post has some great information!
- Whether to helmet or not to helmet. As you can see, I have two babies, both were recommended helmets by the helmet manufacturers; however, when I discussed it with the pediatrician, she thought that both babies would likely self-correct through diligent repositioning and a lot of tummy time. However, as a twin mom, I was already doing the best I could and the doctor recognized that, so we decided to helmet one and not the other. Whether you helmet or not, whatever your decision, it is the right decision because you are the mom (or dad) and you’re sitting here reading about how to fix this and you’ll discuss your baby’s head shape with their pediatrician and decide what is best for your baby! And if they grow up with a slight flat spot like Wren will? It’s okay! Hair will cover some of it and it gives some character!
- Join a Facebook support group! Here’s the link for the one I joined.
Ok, I think I covered everything, but if you have a question I didn’t answer, please leave a comment below and I will either answer in the comments or make revisions.