Just a few weeks ago we had a routine quarterly check-up at the Children’s Hospital in Neurology (which is usually a joint appointment with Plastic Surgery). A larger group than usual came in, and at the end of the typical measurements and banter, the plastic surgeon said, “Okay, we’ll see you in a year!”. “A year?!” I responded”, “Yup!”. Just like that all of our treatments and our regular visits are over. It is so surreal. Although we will still have check-ups (yearly, until he is 22)—everything regarding the surgery is over. His head shape is exactly where they want to be, and we are here in a shorter amount of time than anticipated.
We can all take one huge sigh of relief.
A year ago, almost to date, we were holding our breath, scared to hear the word “surgery”.
I’ve really battled with how to share this story; so full of ups and downs, something so chock-full of emotions. I grappled with the idea of writing all the details so that my readers can really understand the depth of our decision-making. But I worry that my feelings may get lost in the weeds. Or, that by delving into all of my feels (and there were many), I’ll miss details that may be valuable for someone who is reading this to figure out how to help their child. I mean, this is one of the two events that made me even consider starting this blog. So, I guess I will try to do something in the middle.
Here goes…
Saggital Craniosynostosis: “Premature fusion of the sagittal suture that runs from the front to the back at the top of the skull forces the head to grow long and narrow.” (Check out more here)
This is what it looks like:
Craniosynostosis. The diagnosis that we feared for weeks… or, I should say months. Since about August the pediatrician that was following our case had referred us to the children’s hospital, it had been over a month since we had some initial testing (more on that another time) and now the day was finally here.
One Monday afternoon in early November, we sat down as a doctor explained to us, what craniosynostosis was, how it was currently impacting our son and what next steps he recommended— surgery. However, very soon after, another doctor came in (the one that we were scheduled to see--I think the first one was a neuro resident). He gave us some similar details, referred to my son’s case as mild, called the issue “cosmetic” and said surgery is not necessary, but an option if we choose.
If you are like me, you’re a bit confused too. We have two doctors, specialists in the same room suggesting different things. Great! Oh, and to add to it, the second specialists informs us that our son is currently on the older end of babies that they would typically do the surgery on endoscopically (meaning with cameras, and with minimal incisions). He was a little over four months at the time. There was another option for older babies--much more invasive surgery (cranial vault reconstruction or CVR) in which they would cut a zig-zag across the top of his head (ear-to-ear) and reconstruct everything (ya, that’s actually the other option!). Following either surgery, he would then have to wear a molding helmet for about a year.
Internally, I started losing it. My mind was racing. How could these people have me wait so long, to just tell me that he’s almost too old! I was trying to keep calm—but I was firing questions. My options were being taken off the table before they could even be set down properly—and I wanted options. All of them! I let the specialists know that too…calmly of course. I wasn’t sure that I wanted my son to have surgery, I mean, who would volunteer for their child’s skull to be cut open, especially for something that could be mild, and labelled as cosmetic? Would it really get worse? Would kids tease him (kids can be jerks—adults can too)? Could it soon become severe and then cause more problems? Like I said my mind was racing. Racing is probably an understatement.
I think my husband felt my panic. Maybe he heard it in my voice. I don’t know. He is usually the calm voice of reason, and I am usually the one who gets worked up. He was probably wondering why I was pushing this so much– they pretty much said “no need for surgery” (oh, my husband the eternal optimist). I think the specialist also felt my panic. My confusion. There was a lot of emotion in the room. Things had to be brought down a couple of notches, the specialist must’ve thought. I wanted to know things that we didn’t quite have the answers to. The suggestion to help me get those answers? A CT scan. Had the suture (fibrous joints between the bones of his skull) closed completely? This would let us know. Everyone agreed on this. A clearer picture would be better. He also recommended that, if we were thinking of surgery, that we meet with the neurosurgeon who does the endoscopic surgery and he could help make a decision on our son’s case. I jumped at this. Definitely, yes!
Give me every single resource, specialist, test, whatever we need!
Our appointment ended. We would get a call, very soon to get this all booked. Time was not on our side. We needed things to move quickly.
The ride home and the next few days were intense. Especially that evening. We made our calls to our family and very close friends and explained to them what was happening. We asked them for the most part to not share their opinions. The two of us already couldn’t agree on the best course of action with the (somewhat limited) information that we had. We didn’t need a bunch of extra opinions. I was leaning towards the surgery (for the reasons above), and my husband, well he was focusing on the word “cosmetic”.
We Googled, and read, we discussed, we tried to be positive. We got a call to come in that Wednesday to have the CT Scan (to be discussed more in detail in a future post)—and it turned out, the suture was completely closed.
You know when you were hoping for that miracle, and you find yourself utterly and completely disappointed? Ya. That was us. That was me.
We had previously done an ultrasound and an x-ray at the end of August that gave us some information, but neither of those are great tools for diagnosing craniosynostosis. Although I prepared myself for the worse, I was really hoping that somehow, the results of these tests were unclear, or just completely wrong. But no. Closed.
We got the call later on that day, that the neurosurgeon would be able to see us on Friday. We researched. We worried. We prepared questions. We shed some tears. We prayed. We needed answers. We needed information. We needed to make a decision.
So, when Friday morning came along…we were anxious…but ready…
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein
Just when i was getting comfortable reading, it said to be continue. I do not like having to wait for another week. I am very happy that you can share your story with others.