What’s with the helmet?

So…What’s with the helmet?

If I don’t get the question on a daily basis, I get the look, which is totally alright because people look at things they don’t know enough about or are just simply curious about! I’ve grown to love it and think it actually suits her!

Here is a little backstory on why our little girl wears this beautiful pink helmet. Alexandra was diagnosed with plagiocephaly, or a cranial asymmetry, or to put it simply, a head that is somewhere somewhat misshapen. NEWSFLASH! We all have asymmetries and no one’s face is completely symmetrical, but some of us are a little more crooked than others, ha! This plagiocephaly can also mean noticeable facial asymmetry, such as a protruding forehead or cheekbone in addition to the head itself. In short, there is a flat spot on the back of Alexandra’s head; and the left side of her forehead also protrudes a little, or at least it did.

For he first 6 months, we had a pretty spacey pediatrician, I now realize. On our six month follow up we were told she had left the practice, so we got switched and there was a world of realizations for me. This pediatrician was obviously a lot more experienced, and very grounded – even a bit stern at times keeping it very very real, which is not something you want all the time, but really need, so I appreciated that. She quickly suggested Alexandra should be seen by plastics, because “her head wouldn’t just round out on its own”.

I’ll be darned – here I am, in full realization that my baby’s head wasn’t preferably round, yet I’m choosing to believe it would be alright, letting the other lady (pediatrician), say everything was cool, normal when deep down I knew it wasn’t. I felt a little cheated because I just knew better, and was also a bit upset with the previous doctor paid no mind to this.

The other part of me really wasn’t into the idea of my baby wearing a helmet for months! Would she look weird? Would people stare? Stupid insecurities that would mean absolutely nothing to her, and this was the whole point of this wasn’t it? The BEST for Alexandra. I didn’t realize how common helmet therapy is, and how quickly it worked, and how much babies could careless about wearing the helmet at all!

I went back and forth on it, for the reasons I just mentioned, the price point was also not fantastic (it’s salty and since it’s considered completely cosmetic in nature, a lot of insurances don’t cover it, including mine) and between all our traveling we do (quite excessive at the moment) it was a bit of an inconvenience, but I made it work and the appointment to get baby A fitted, closer to 8 months because that’s when I could fit it in our schedules. Initially they take many measurements of the baby’s head, plug it into an equation and decide the severity of the head shape.  She fell on the high end of moderate, which basically meant low end of severe plagiocephaly. Although the plastics nurse practitioner and prosthetist said the obvious, her hair would eventually cover up the flat spot in the back, they still recommended Alexandra wear the helmet for 3-6 months, likely for four months given the fact she is an older infant. I was also informed she’d have to wear it close to 24 hours a day – they really insisted on at least 22 hours if possible, but definitely not less than 20 hours, which meant sleeping in it, even for naps was imperative.

The worse part of all this, I eventually learned, was having the baby sit still during the head scan. Even the slight hiccup really messes everything up, and doing it multiple times with a crying baby just isn’t fun or productive, but was necessary, so here we went.

On the first fitting, the prosthetist uses a stocking like structure on the baby’s head so a true head shape is analyzed. The baby has to stay very still, which is a challenge during the scan. Baseline asymmetry measurements are taken, and the baby is followed monthly, except for the first follow up which is after a week, just to make sure everything is going as planned and no skin breakdown is occurring. Alexandra particularly hated this assessment, because she was placed in this box like scanning machine that used laser technology, and she had to stay very still, which means someone (me) has to hold her arms and legs, so you get the picture. Not fun! Anyway, besides that, everything else is a walk in the park, and she doesn’t mind the helmet one bit.

After fitting, it took 2 weeks for the custom helmet to come in, and it was so cute, as you can see. I was immediately happy with the decision I made to go through with it – not only did she not care one bit about wearing the helmet, it also protected her from the cruel world and bumping her head, which is all the time since she started taking steps to really walking! A month in and there was already progress, slower than what it would have been if she was under 6 months old, but since she was 9 months old when we started, we knew we’d move slower, but steadily.

Minutes after helmet fitting, happy as a clam at the 9 month check up! Couldn’t even disturb her nap!

The schedule on the first week was as such:

Day 1: one hour at a time, 3 times a day

Day 2: 2 hours at a time 3 times a day

Day 3: 3 hours at a time, 3 times a day.

Day 4: Business as usual from here on out. All the hours (the goal going forward was at least 22 hours a day). Basically keep the helmet on at all times except during showers and quick breaks here and there. Naps and sleeping are with helmet. Sweating is normal and would eventually subside within 2 weeks.

PROS:

1. Obviously a nice and round head as an end result, so I won’t have to tolerate her teenage attitudy self complaining about how her hats and sunglasses don’t fit her asymmetrical head, so we are taking care of that! I mean, can y’all imagine? I can totally see her doing that to me at age 15.

2. She also could care less about the helmet since minute 1, and is in it all day and night. Yes she got good at taking it off when she was upset at something else, but just to fuss. It wasn’t because the helmet was hurting, but just to show independence, and the fact that if she wanted to, she could in fact take it off easily. She had a short fuse sometimes, but for the most part it’s quite easy to get used to.

3. The helmet is super light weight, like 6 oz, so pretty comfortable, and most importantly, has a HARD shell that protects her.

4. As parents/caregivers, you get really ninja at taking it off and putting it on. It becomes part of your routine, automatically.

CONS:

1. If your insurance doesn’t cover it, it costs a pretty penny – around $1,800- 2,000 USD, and since it is considered 100% cosmetic, you won’t likely win this battle. Most places allow payment plans, which is good, and some insurance plans to cover it – just mine didn’t.

2. Hot: Babies are typically warm natured, and Alexandra is a little furnace! It takes about 2 weeks for their head to adapt to the heat, so keeping the baby cool helps them tolerate it. Still, every time she manages to take off the helmet we blow on her head and scratch it for our own peace of mind. She does sweat, so we clean it with isopropyl alcohol and let it dry once a day, (a dry sunny spot is preferred) or every other day to prevent it from unpleasant smells.

3. The Scan: The prosthetist needs the baby to stay very still in this scan machine,and Alexandra simply HATES this thing. It they don’t stay still for the scan, they need to take manual measurements which are just not as accurate, but it is what it is. At our 3rd visit she simply would not comply. What can you do? If they’re in one of their moods, they won’t sit still.

4. Watch your face! Mostly your nose and collar bone. Apparently babies will head butt you and fractures have occurred! I have a friend who’s 4 year old broke her nose and he didn’t even wear a helmet, so imagine what a helmeted kid could do? Watch out!

She has no issues sleeping with the helmie on as you can see.

I’ll keep updating our helmet journey, but so far so good!! I suspect our recommendation is to continue wearing it through the end of January 2018, which will put us at 4 months- maybe even longer since it’s such great protection against head bumping everywhere!

UPDATE – JANUARY 2018!

My predictions were nearly correct. Just this week (3rd week of January), we went in for Alexandra’s 4th follow up for month 4 of helmet therapy and to our surprise (I don’t know why I was surprised) we were discharged. Just like that! Somehow, she actually stayed still in the scanner machine, which she absolutely hates and he was able to get a good reading on her the first go round this time, and boom! It was good – This is what it looked like:

The results were as expected for an older infant – to wear the helmet for 3-6 months. She apparently reached the goal right at 4 months, since we started beginning of October when she was 9 months – apparently a little on the older side. The prosthetist suggested we might put her in the helmet to sleep most nights of the week for the next 4-6 weeks, but completely liberate her from it during the day. “She has to get used to not wearing a helmet”, he says. I was a little sad and shocked – I thought for sure he would say at least another month for some reason. Apparently the cranial vault measurements (main measurements they assess) were mild and very close to “normal”, the nice and round parameter they look for, and we started on the other end – moderate, very close to severe. Her facial asymmetry had been corrected which is what we really cared about, and even the back had filled up quite nicely as well. Soon, she will have hair and no noticeable flat spot at all.

So I guess we are done here? Just when we were getting used to this. I was actually enjoying her wearing a helmie and being protected at all times. I couldn’t tell you how many times that thing saved her. Now she will be left to fend for herself against the tables and walls, and hard floors. It will take some getting used to for sure.

My advice:

I think this was the best decision we ever made for our little one. If you notice any asymmetry on your baby, fascial (forehead, cheek, ear, eye) or anywhere else on his/her head, don’t just shrug it off. Our first pediatrician overlooked this, and at our 6 month check up we had another one that picked it up right away. I had noticed a bit of asymmetry but had loving parent eye syndrome and didn’t want it to be, but it was, and it was fixed, in only 4 short months!

If the babes are just a couple months old, it can be fixed with positioning or only a few weeks of helmeting, so don’t overlook it and do right by your babes! They will thank you later, and they look so stinkin cute in their helmies anyway!

I hope this post helped you in any way possible. Please let me know if you have any questions below regarding helmet therapy or cranial reshaping. It is a wonderful painless treatment that your child will get used to easily and it really won’t bother them nearly as much as you may think. Don’t worry about what ANYONE will think or say about your baby’s helmet, and educate those who need enlightenment. You never know who you may help but answering the simple question: what’s up with the helmet?

Oh yea, and have fun with it! We used bows and lots of Velcro to switch them out, but there are really cute companies out there that decorate these and make them beautiful! We just decided to keep it simple and just switch out the bows here and there, when she allowed it. She mostly would rip them out and tried to eat them as she got older!

Now to get used to her “new normal” which is helmet-less and susceptible to falls, bumps and scrapes. The helmet is wonderful to prevent those but our hard skull is the perfect protection against outside elements! Gotta learn how to avoid those by just living!!

I hope this was helpful! Drop a line in the comments if you enjoyed.

Xo, Ana

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