I am so excited to be able to finally write this post! As many of you know, Addie graduated from her cranial remolding helmet last month. We are very pleased with the results and are so happy with our decision to helmet. I wanted to write this post first and foremost as a resource for other parents who are on the fence about whether or not to helmet their child due to a head shape abnormality. Second, I wanted to share our story with family and friends so they can understand why we chose to helmet Addie and so they can see the end results!

In 1994, the US National Institute of Child Health and Human Development initiated the “Back to Sleep” campaign which encourages parents to always place their infants/babies to sleep on their backs to reduce the risk of sudden infant death syndrome (SIDS). Since the campaign’s launch, the rate of SIDS has declined more than 50%. As new parents (and me being a strict rule follower by heart), we were adamant about applying this practice with Addie. Any parent will tell you there is nothing more terrifying than the possibility of SIDS. It is frustrating that they do not yet know what causes SIDS. I pray that they find the cause soon! I will be honest that I let this consume me more than I should have during Addie’s first year. (Hmmm…I see another blog post for another day about fully entrusting your children to God…)

So, every time we put Addie to sleep, on her back she went. Since babies skulls are still soft, their heads are easily molded. And since we were putting Addie to sleep on her back, there was a lot of pressure on the back of her head. One of the things that every pediatrician recommends is “tummy time” for your baby for at least 30 minutes a day. This helps them develop their neck and back muscles but also keeps them off the back of their head. Addie did NOT like tummy time. She cried and cried and cried every time we did it. (I have learned that for the next baby, I will persist through tummy time even if he/she screams their head off.) So with the combination of sleeping on her back, hating tummy time, AND spending time in the car seat, infant bouncy seat, and her Rock n’ Play, we noticed Addie’s head really starting to flatten and have a funny looking shape at around 4 months or so. Addie also favored turning her head to one side (which may have been a result of torticollis which is a fancy word for tight neck muscles) so not only was the back of her head flattening (brachycephaly), but so was one side (plagiocephaly) which was causing her head shape to be asymmetrical and very odd looking. If left alone, there was a possibility that it would cause facial abnormalities.

We mentioned our observation of Addie’s head to our pediatrician and she gave us the option to see a neurosurgeon to assess whether Addie would be a candidate for a cranial remolding helmet. There is some debate in the medical community as to whether or not cranial remolding helmets actually work. (I will tell you, my own personal opinion based on our experience is that they absolutely do work.) Our pediatrician said that usually by age 2, a baby’s head will have rounded out on its own. The dilemma we were faced with though was the big “what if”.  What if Addie’s head doesn’t round out on its own? Will she have to live with a funny shaped head and potentially get made fun of and have self-esteem issues later in life?

We had a visit with a pediatric neurosurgeon who took a look at Addie’s head and had measurements done. Addie had what was considered moderate plagiocephaly (her cranial vault asymmetry was 11.6 mm) – she was borderline severe (which is anything >12 mm). The doctor noted that her right ear had started to push forward. So based on all of that, he definitely recommended the helmet for Addie. We were also told there was a risk of things getting worse if we didn’t intervene.

So that doctor’s visit certainly was not a happy one for us. As we were trying to make the best decision for Addie, I scoured the internet looking for other people’s stories who chose not to do the helmet because I honestly did not want to put Addie in one. My reasons were as follows:

1. People will stare at her and think something is wrong with her and I will be uncomfortable taking her out in public.
2. Having her in a helmet will make it difficult to nurse and snuggle.
3. For a huge chunk of the first year of her life she will have to wear it and most photographs of her will include a stupid helmet.
4. It will be a pain to maintain.
5. We live in Florida and it will be sooooo hot for Addie.

If you didn’t catch it already, four out of the five reasons above were completely selfish reasons. I was so focused on not wanting to helmet Addie because of how it would affect me and my feelings. Deep down we knew it was the right thing to do for her. The fact of the matter is that Addie would not remember the helmet. While 4-6 months seemed like an eternity – it really is a blink of an eye compared to the rest of her life. And the biggest positive of all is that we would not EVER have to deal with regret.

That is one thing that I found over and over again for those parents who didn’t helmet – they regretted not doing it. There were some who were ok with their decision even though their child’s head never rounded our perfectly, but the majority wished they had.

If you are reading this right now and you’re on the fence about helmeting your child – I want to encourage you to go ahead and do it if it is an option for your child. You only have a small window of opportunity to do the helmet – and once it’s gone, it’s gone. The things that I was afraid of or thought would be just horrible really weren’t that bad.

• It didn’t take long at all for us to get used to putting the helmet on and taking it off.
• We took lots of pictures and videos during Addie’s helmet free hour every day.
• It is not hard to get into a helmet routine. Since we had to bathe Addie and wash her hair every day, we chose to set our time at 5:00 pm each day to give her her bath and have her helmet free hour. We took turns bathing her each day. Whoever was not bathing her would take a few minutes to clean the helmet with alcohol and a cloth. Walgreens sells alcohol in a spray bottle which makes cleaning the helmet a breeze!

*A little shameless personal plug – we used Beautycounter’s All-over Baby wash to wash her hair – it is ultra gentle, and free of harmful chemicals! Click on the photo below if you want to purchase from me as I am a Beautycounter consultant! 😉

All-Over Baby Wash by Beautycounter

• When we went out in public, some people would look at Addie – but they never awkwardly stared at her for long periods of time. Many people (and even kids) would actually kindly ask us why she had the helmet. I actually loved when people did this as it gave us a chance to share her story and help spread awareness. A lot of people assume that the helmet was to protect her head from bumping into things. (This is definitely an added bonus!) Never once was anyone rude.
• Nursing was not as bad as I thought it would be, and I just made sure to nurse and snuggle her during her helmet free hour.
• While Addie did have to wear the helmet during Florida summer (which is the worst!) she never seemed to mind it. Her head would be soaked in sweat, but it never made her fuss or cry. She actually never minded the helmet from the start. We thought for sure she would cry when we first put it on, but it was like nothing changed.
• Addie looked so stinking cute in her helmet – and even more so when I added velcro bows to it. Unfortunately, I was only able to use those for the first couple months because she got smart and would pull them off. I bought my bows from Averysbows on Etsy. I highly recommend her shop! (*As of this moment, it looks like she is taking a short break from her shop but will be back.)
• The best thing of all is that throughout her time in the helmet, we could slowly see progress. We could tell the helmet was definitely working and that brought a ton of reassurance that we made the right choice.

There are a few different companies that make cranial remolding helmets. In our area, we were referred to West Coast Brace & Limb who uses the STARband helmets. At Addie’s first visit, her head was scanned with a laser scanner (which only took a few seconds) in order to get her starting head measurements. As mentioned before, her cranial vault asymmetry was at 11.6. Her cephalic ratio (which is the width divided by the length of her head) was 94.9%. Normal cephalic ratio is between 75-90%. A normal head is longer than it is wider – Addie’s head had a more boxy shape where the back was flat and when looking from the front her head looked a bit wider than normal.

There were two options we could choose for her helmet, one was the thicker foam style that most people are familiar with. These have a hard foam on the inside that is shaved away in areas that need shaping as your child’s head grows. While it seems like it would be more comfortable for your child, it does not provide any “cushion” and the thickness of the helmet may actually make it a bit more difficult for your child to adjust. The other option, which was recommended over the foam one was the clear helmet. This had many benefits over the foam – it was significantly thinner and not as bulky, because it was clear you could see if there were any pressure points or areas of concern that were getting irritated, it can be molded much easier with heat, and it stinks less and is WAY easier to clean. We were sold – definitely go with clear if you have that option. You can still put stickers/bows on it and decorate it if you wish.

Addie wore the helmet for just shy of 6 months. Her cranial vault asymmetry improved significantly coming all the way down to a 3.9 (where normal range is a 6). Her cephalic ratio only went down to 92.4%, but we were ok with it. We asked if those numbers would improve any further if we kept the helmet on, but our orthotist said we would have to keep it on for months longer with the possibility of only a very slight improvement that we probably wouldn’t be able to notice. This was mainly because Addie is a year old and this is when the skull really begins to harden and there isn’t a whole lot of room for significant remolding. So with that, we all agreed it was time for Addie to be DONE!

We are so thankful for this helmet journey but are glad it is over. Thank you to our awesome orthotist, Amanda, and everyone at West Coast Brace & Limb. And THANK YOU to all our friends and family who have been so encouraging to us and supportive of our decision. If you’re reading this (whether I know you or not), and you are about to start a helmet journey of your own, I would love to answer any questions that you may have or provide any support or encouragement that you may need!

I am so glad we can wear pigtails with bows now! 🙂

 

And now for the part that you all have been waiting for haha! Here are Addie’s before and after photos!