Unless you are heavily surrounded by cranio content, you probably do not know that September is Cranio Awareness Month. Don’t feel bad, I didn’t know that until after my son had surgery and I joined a few groups and started following a few organizations online. Anyway, as it is Cranio Awareness Month, I figured I would share with you a part of our Cranio journey that I have not talked about very much on my blog – a part that many parents struggle with and that their babies have a hard time adjusting to. Helmet therapy.
One of the first things that will likely get attention when you have a cranio kid is their helmet (to clarify, not ALL cranio warriors have helmets, most who have CVR (which I mentioned as the ear-to-ear surgery here), do not go through helmet therapy.
I must admit, it does make a baby stand out when they have a cute little chubby face and a bulky helmet on their little heads.
Most people, incorrectly, assume that the child has a helmet due to Flat head syndrome (also known as plagiocephaly). This is what parents are warned about when people tell them not to leave their kids laying in one position for too long. Sometimes people would think that it was some sort of protective helmet, and joke that they wished their baby had a helmet because they were so clumsy (*sigh* the amount of times I got that stupid comment!) But helmets for cranio babies are a whole other kettle of fish.
My son wore his helmet for a little over 6 months, until he was slightly over a year. We were instructed to have him keep it on for 23 hours a day, 7 days a week. Helmeting produces the best results for shaping the head (no, it is not for protecting the skull post-surgery) if we followed these instructions. Given that my son was about 6M old when he got his first helmet, you can imagine all the changes that he went through in that time. As my husband usually did bath and bedtime prep, I would always be shocked at the changes in length and texture of his curly locs. In fact, I was so used to seeing him with his helmet on, that when we finally got the okay to take it off, it took me awhile to adjust to his “new face”. He was absolutely adorable with his little helmet and now without it, he looked—different. Still adorable, just different.
He had two helmets, all black, that now currently sit on the top of the shelving in his room. A reminder of how far we’ve come, and how grateful we should be. Before he had surgery, we were told that he may need the helmet for up to a year, but thankfully that wasn’t needed. Although we loved our orthotist, helmet therapy meant our appointments to adjust his helmet (because their heads are constantly growing) were about every two weeks. If we needed a new helmet, that could mean weekly for 3 weeks (one to make a new mold, one to try on the new helmet and make adjustments, and the final week to adjust again after having one week of regular activities). The adjustment appointments took less than 20 minutes, but getting to or from the appointment would take about 30 mins (or up to an hour with traffic), and being that she was pretty much the only person who did this therapy in the area (and gave excellent service), sometimes there was a bit of a wait. When dealing with children you never know how things will go, or how long they will take.
All-in-all our actual experience with him wearing the helmet wasn’t too bad (until the end…I’ll get there). It took about two days to get him used to wearing the helmet, and he was able to wear it through the night (yes, the babies wear it to sleep! 23 hours remember?). We didn’t make a big deal of it when he wore it, so it didn’t seem to bother him either. By the end, the orthotist had to add a strap because my son was able to pull of the helmet, and he would often throw it (in the car, out of his crib, stroller, etc…). In fact, right before we were cleared to stop wearing the helmet altogether, he started removing the strap! He obviously knew before the specialist that he was done!
One of the most difficult things about him wearing the helmet, as I hinted to above (and mentioned in my earlier post: Being A Mom of a "Sick Kid”) were the comments.
On a given day, I would have several emotions. Sometimes people would stare and say nothing. Sometimes kids would point or whisper questions/comments to their parents.
Those were terrible—I felt like I was being judged without having an opportunity to defend myself or my child and let them know what a strong kid he was, and what he had been through. Then, there were those who would stop me on the street or in the store to tell me they had a child (or knew of one) with the “same thing” and they turned out fine. At times I’d ask if this child went through surgery, to check if it was indeed the “same thing” and maybe drop some knowledge on them. Other times I would just smile and thank them—they were trying to reassure me, they meant well…right?
The day when the orthotist was to decide if we needed a 3rd helmet, we also had an appointment with the plastic surgeon and neurosurgeon. His head was looking great, and a third helmet would be a complete out-of-pocket expense, so we awaited details. While the orthotist was considering a 3rd helmet, the surgeons decided that his head was “perfect”. The measurements were far into the normal range, and no more helmeting was needed. I was excited but hesitant, we were (for the second time during this cranio ordeal) having mixed advice. The liaison nurse was not there, but we were promised that they would contact each other to make sure both sides were on board, but they were 100% certain my son was done. Someone was away during this time, so it took about 2 weeks (during which we still had our son wear the helmet, better safe than sorry). The orthotist office let us know that we could stop the helmet. We were overjoyed. We could finally put this behind us.
Although the helmet for some is often a symbol of pain, surgery, hardship and sleepless nights. It is also a reminder of resilience, hope, fight and love. So much love. That’s what we’ll tell him now when he starts to ask questions about it all. That life was tough, but he was tougher. That his scar, just like his helmets, is something to be worn with pride—like a crown.
“Courage, above all things, is the first quality of a warrior.” – Karl von Clausewitz