Monday, March 2, 2015

Brachycephaly: Why I Decided on a Helmet

Even before we saw the Cranio-Facial Surgeon and the orthotist, I knew Elizabeth had a large, wide head. For weeks (and months) before her appointment, I would take pictures and analyze them. I would send them to friends. I would go online and compare her head to the heads of other babies her age. Genetics played a role in the size of her head. Apparently us Schoonmakers have large heads - that we already knew. But what alarmed me was how wide her head seemed and the bulge she had on her forehead. It wasn't major, but it was enough to raise concerns. I will note that her pediatrician did not offer any drop of concern when I brought it up many times - other than the fact that "once she sits up more in the Bumbo and is able to reposition herself more often, her head will round out". 

Lies. 

My mama instinct told me to pursue this further and I'm so glad I did.

I first started with Google. I know - NEVER a good idea, especially now that I'm a mama. Google provided me with all sorts of alarming pictures and information that was over my head. Cephalic Index? Aysmmetry of the face? Say what? But in doing HOURS of research, it all became easy to understand. Baby JB has a wide head. Wider than it is longer from front to back. Is this of major concern? No. But her Cephalic Index (the ratio of the width of the head multiplied by 100 and then divided by the length of the head) was 97.7% which placed her in the "moderate" category for Brachycephaly. 

Brachy what?

Brachycephaly. Sounds scary. But in reality, it's easy to understand. If you look at images of her head from different angles, it's quite noticeable that her head is wide. Luckily her eyes and ears are symmetrical. In many cases, there is noticeable asymmetry. Elizabeth also has a mild flat spot on the back right side of her head. Is it noticeable to the "untrained" eye? I don't think so considering the fact that everyone I asked prior to getting the helmet said that her head looked normal to them. But, I felt that helmet therapy was doable and that it would be in the best interest of Elizabeth to go through with it.

According to all the websites I've come across on the internet, Brachycephaly is where the head is disproportionately wide. I know - based on the images you find when you Google it, Elizabeth's head is completely normal. There are some babies out there who have extremely wide heads and it actually causes issues with brain growth as well as problems with being able to wear glasses correctly if the facial features, like ears, are asymmetrical. In addition to Brachycephaly, she also has a slight (again, not noticable to someone who isn't on Google every day or isn't in the medical profession) tilt as well as mild Tortocollis (she favors one side). Luckily her Tortocollis is so, so mild. Some babies aren't able to turn their heads at all to one side. My niece had this pretty bad when she was a baby. Elizabeth sees a physical therapist once a week as well as a chiropractor. I like to think us Whites are keeping the medical industry in business!


So then why helmet? 

It's 2015 and the medical industry is amazing. If there is a treatment that is going to correct the issue, why would I not go through with it? I do know that at times, it is probably uncomfortable for her. I couldn't imagine wearing a helmet on my head for 23 hours. But we are adults. She's only 6 months old. She'll never remember this. She won't ever be able to talk about what it was like to wear a helmet. She'll never know that her head often smelled like a gym sock (actually, her helmet doesn't smell yet... we're just waiting for that to happen).

But I will tell her all about it. I will show her pictures. Not for one second have I been embarrassed that our daughter needs to wear a helmet. I post tons of pictures on social media and I talk about it all the time to family, friends, and colleagues. It's just something temporary in her life. And if the stars align and everything works out, her head will look wonderful once helmet therapy is done. Am I looking for a perfectly round head? Absolutely not. Perfection does not exist. But again, if something has been developed to help correct the problem, and our health insurance deemed it medically necessary (it's almost completely covered by insurance), you bet I'm going to jump on it. 


So we are almost three weeks in. 
Has it been easy? No. 
Has it been hard? Yep.
Did I want to throw the towel in already? Yep.

But we are working through it and it's all a learning curve - we know that she needs to be dressed in cool clothes. We know that she can't sleep in the swing because then she curls up onto her side and the pressure from the helmet leaves wicked red marks. We also know that for a few months, she won't be able to wear adorable bows in her hair.

But this is just temporary. It won't be forever. It's a small fraction of her first year of life here on this beautiful Earth. 

Now that we're in the midst of helmet therapy, I wish more people out there knew about it. I wish more pediatricians were educated on the fact that yes, major growth spurts occur at six months, but if this growth spurt is missed and the baby is not yet in a helmet, it will slow the progress drastically. This is why I pressed the issue so hard. I know tons of mommies out there who don't have any idea what Brachycephaly is. Or plagiocephaly (another scientific term for malformation of the head). Obstetricians don't explain that this can sometimes be caused by position of baby inside the mommy's belly (most of the time this is seen in twins, where one was always sitting on top of the other twin - and this results in only one of the twins needing a helmet). Was Elizabeth's wide head caused by her position in my belly? No. How do I know? Well, her head was pretty round when she was born. Therefore, hers was caused by position. Did she lay around too much? Not at all. But she spent a lot of time in the Rock and Play, which I'm now finding out, is not appropriate for sleeping every night. It should only be used on occasion and unfortunately, we were using it for naps and at nighttime for the first four months of her life. So all this time we were so happy that she was such a rock-star sleeper, we weren't even realizing it was causing damage. 

Do I regret this? YOU. HAVE. NO. IDEA. 

But, we're fixing it and now I know to be cautious of baby's position while sleeping. Parenting is all a learning curve and I simply refuse to blame myself or my husband for this. Things happen. But now that I know about it, I want to inform other parents that it can be, in some cases, prevented.

So, now you know all about Brachycephaly and why we decided to put a helmet on our little sweet pea's head.

Stay tuned this week for Life With a Helmet: Part 2, which will be our three-week update! 


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