Helmet Rants...

It’s been a while, partially due to a vacation, a destination wedding, house hunting, and holiday prep, but also because I have some mixed feelings about the helmet and our craniosynostosis diagnosis and I’ve been trying to decide how to explain them without seeming insensitive. I doubt any of my family and friends reading this would be offended but if someone stumbles upon this who has received a craniosynostosis diagnosis, I can see where they might disagree with my feelings.

First, the craniosynostosis diagnosis specifically. While there are some babies who have craniosynostosis as a symptom of a larger problem (Eli probably falls into this category, as would kids with things like Apert syndrome or Crouzon syndrome), most babies have this as an anomaly. They are 100% normal in every other way, and once they have the surgery to correct the fusion closure, they go on to lead completely normal lives. I’m in a lot of craniosynostosis support groups on Facebook, and while I understand (TRUST ME, I understand!) what it’s like to worry about your child and wonder if they’re going to be ok, I think some of these people with kids who only have craniosynostosis go a little overboard with the drama and frankly, treat craniosynostosis as this giant serious life-changing disease when it just isn’t. Yes, it’s scary anytime your kid has a problem. Yes, it’s really scary to send a three-month-old into skull surgery with a neurosurgeon. But I see things like parents talking about how their seven-year-old is a little behind on spelling, and maybe it’s because they were born with craniosynostosis and had the correction surgery at 7 months old. Not very likely. There is really no point to this little discourse of mine except it annoys me and it’s my blog so if I want to talk about it, I will. And if you find this because you have received a craniosynostosis diagnosis, I know it sucks, but your kid is probably going to be just fine (and you will be just fine too).

Next, the methods that go into correcting craniosynostosis (side note, typing craniosynostosis this many times is giving my fingers a workout). The historically common method for correcting the skull fusion is called Cranial Vault Reconstruction, or CVR. It takes several hours and essentially the surgeons go in, cut the skull into pieces at the location of the fusion, rearrange the pieces to properly shape the skull, then close up the skull. The incision is usually from ear to ear, going over the top of the head in a zigzag manner. Blood transfusion is pretty much required with a surgery this long, and kids have a hospital stay of 3-5 days. More recently, the endoscopic strip craniectomy has risen in popularity. This is what Eli had. They go in, cut a strip of skull out where the fusion is (about the size of a credit card), and close the skull, all within about 45 minutes. Many times blood transfusions aren’t needed for this method since it’s so fast. Then there is a hospital stay of 1-3 days. The downside to this method is it requires the baby to wear a helmet 23 hours a day for several months (I think 6-18 months is about the range I’ve seen). First off, I’ll say that sometimes parents come to the support groups and talk about getting craniosynostosis “cured” by a chiropractor (?) or naturopathic methods. Uh, no. No naturopathic remedy will un-fuse a baby’s skull bones. One more time for the people in the back: NATUROPATHIC REMEDIES WILL NOT CURE CRANIOSYNOSTOSIS. You have to have surgery. The end. Second (and this is where I’ve been trying to state my feelings in a diplomatic manner), I understand why CVR is the only surgery choice for some people. Older kids, for example. The endoscopic method only works on young babies, so surgeons won’t do that surgery on kids older than 4-6 months (exact cutoff varies by doctor). People who live hours away from an orthotist who is certified to work on the helmet. People who have demanding or strict workplaces who aren’t able to take the time to go to helmet adjustment appointments every week or two for several months. CVR is understandable for situations like that. But in lots of cases, people say they choose CVR because they “don’t want to deal with the helmet.” I don’t like that answer. I would LOVE to not deal with the helmet! I hate that thing. It stinks, it makes Eli’s head stink, I can’t cuddle him and kiss his head, I’m constantly getting smacked in the face with it, people stare…it sucks. But in my opinion you choose a surgery method based on what’s best for your child. And overwhelmingly, that’s the endoscopic method. It’s so much shorter and less invasive. There is no more risk of needing a second surgery with endoscopic than there is with CVR (a common misconception that I asked our surgeons about). And the number one point is the time under anesthesia. Anesthesia is no joke. Anesthesia is risky to adults! Doctors hate putting people under anesthesia if they can help it. So in my opinion…I just couldn’t stomach choosing CVR just for my own convenience when I thought about how much better it would be for Eli to be under anesthesia for 45 minutes versus six hours. That aspect alone made the decision for me.

So, that’s my rant for the day. I was only going to discuss those things as a short preface to my actual post, which was going to be about receiving Eli’s helmet after surgery and getting him used to wearing it. I guess that will have to wait until next time…oops.