Disclaimer: This is my experience with the process. It may not be yours. It may be similar; it may be completely different. It can be highly specific depending on the child, which type of craniosynostosis, the family dynamics, which type of surgery, what hospital, what doctor. I wobble back and forth in telling this as a story, as it unfolded for us, and telling you facts and items that helped instead of the story. So take it for what’s it worth, as just another experience. File it away for reference as either helpful or not.
So, your doctor has just said to you, “Hey, that funny head shape? It’s not just a newborn thing. I think it might a problem that we’re going to watch and see if it gets any better, and oh by the way, your kid might need surgery. KTHXBAI!” Or maybe your doctor has been silently watching your baby’s head shape, running her hands over your baby’s soft spot, and finally, at one well-child visit, said, “The soft spot seems to be closing. We’re going to refer you to a specialist for some scans. It may be nothing; it may be something that needs surgery.”
All of this means you’re freaking out, trying to figure out what the hell craniosynostosis is, when you can barely remember how to spell it, and sure as hell can’t say it. You’re waiting for the referral to get the scans; you don’t know anything, and that is the biggest problem. You just don’t know. So you Google.
Okay, you did, and that’s how you ended up here. You probably did a Google image search, and saw los of scary pictures of severely deformed children, and then saw one—mine!—who had just a kind of funny head shape with indents in the side. Not too bad, just a little goofy, something hair would cover later in life, right? Wrong. If we had let her head shape go on, she would have been severely deformed, and that would have been the least of our problems. As her intracranial pressure increased, so would her risks for brain damage, blindness, seizures, etc. But, it won’t, and now her little head is nice and round, with plenty of room for her brain.
My husband went through all the medical journals and articles that he could find. Here are some of the ones he found helpful: [okay, they are lost on the hard drive somewhere and I will put them up when I find them]
As you are Googling, you’re going to come across information indicating that there are two kinds of surgeries: endoscopic, which is touted as “less invasive,” and cranial vault reconstruction, which is what we had. File it away for questions for your doctor at the appointment. More on this below.
Diagnosis: First Appointment.
Our doctor referred us to the local children’s hospital, Riley. I HIGHLY recommend going a children’s hospital, because they specialize in CHILDREN. You don’t need to worry about what kind of patient the anesthesiologist took care of last, because the person drugging your child is someone who specializes in kids. They have tools that are kid sized. They are familiar with all the kid specific issues. They are used to handling frantic parents. In fact, if you are all in the area of Riley, even if it means getting a hotel, I recommend Riley. It’s a children’s hospital that does some of the most of these kinds of surgeries.
The waiting between the referral and the scan is hard. Try not to Google to much or get too worked up. You know there is A Thing you need to deal with, and The Thing is being addressed, and in the meantime, The Thing is not hurting your child. You are acting in good time. Personally, Vor and I did not tell anyone about it, because we felt we just could not handle the emotional response from other people, the questions we couldn’t answer, the demands for information we didn’t yet have. Make your own choice.
The scan, diagnosis, information dump, and surgery date setting happened all in one swoop. The nurse came in, took a quick look, and said, “Well, we need the scan, but her head shape is a classic head shape for sagittal craniosynostosis.” She sent us down to the scan. The scan was done in five minutes, though Her Ladyship Lis did not appreciate being restrained for even a short period of time. Vor stayed with her (as he does for medical procedures—I get woozy) and I paced the hallway. They sent us back to the neuro team and we waited in our room.
The good doctor was in within minutes of seeing our scan, gave us the brief “Yeah, I saw her scans. Yeah, her skull has fused shut.” diagnosis, and sat down to talk. The neuro NP followed her in a few minutes later.
This is the part where you need to have a second person there with you. Don’t do this appointment on your own. The whole part had been hard emotionally up to this point, but it got really hard here and there was a TON of information. Bring someone who is good at shifting gears and becoming a data collection device and asking good questions, if that’s not you. The doctor walked us through what the diagnosis meant, and showed us the scans. She showed us what normal would be, and how we weren’t. She walked us through the risks of the conditions, and what surgery entailed. She went through the entire surgery procedure, recovery, and risks. She talked about the other endoscopic alternative for surgery, and why that wasn’t good choice in her case. She answered our questions patiently. She gave us every bit of information we needed, and some we probably wished we didn’t need. She was, in short, amazing.
Here’s where we talked about the endoscopic versus the cranial vault reconstruction. Given Lis’s situation, we were not in a position to even consider the endoscopic approach. We still asked about it, because obviously, anything that is less invasive sounds better, right? I don’t know. Even if Lis had been a candidate for it, I think we may not have chosen it, and here’s why: (1) It’s newer, and has not been practiced as often. (2) It really is not that much less invasive—they are still opening up your kids’ skull, for pete’s sake. (3) the levels of pain and swelling afterwards are the same [other cranio parents have told me this, ones who had two kids and did both ways, one on each kid, as did the doctor]. (4) A helmet will be necessary for about a year afterwards. (5) A bigger deal to me than the helmet is who is controlling the helmet. A technician works with you on shaping the helmet over the course of the year to make the head shape round. This means that the technician is in control of the head shape, not the doctor. That really bothered me. [NOTE see the disclaimer above. You need to make your own choice. These were our thoughts and reasons].
We set the surgery date. The surgery sate will be dependent on your child’s age, how old they want the child to be at the time of surgery, the stage of the fusion of the sutures, and yes, insurance. For us, we were precleared for the surgery, because I called as soon as we were referred to Riley for a diagnosis, so we were set to go within six weeks. We needed to wait for Lis to hit six months, for various medical reasons dependent entirely on her specific issues.
We took Lis down to get her blood drawn for her blood type. GO TO THE PHLEMBOTOMIST. Do not let anyone other than the professional blood drawers (who draw blood all day long from tiny children’s veins) take your child’s blood. Vor calls them the professional vampires. They had that needle in and out and all the blood the needed and Lis didn’t make a sound. They were excellent. Every time we had to do this, they were excellent. After one disaster with a regular nurse (who was very kind), we would not let anyone other than the professional vampires take her blood.
Okay, fine, you can email me at graceandpressure [at] yahoo [dot] com. Don't all flood me with emails at once, you know. If you're emailing about craniosynostosis, put it in the subject, and I'll respond quicker. Deal? Deal.