The first hard thing to cope with during the diagnosis for scaphocephaly is getting the CT scan. Having your infant put under so that they hold still is quite simply an unpleasant thought. Fortunately, the process only takes a few minutes, but it felt much, much longer.
Getting the referral for the CT was far more difficult, as our insurance changed over on April 1. We had been on COBRA, but my husband's insurance from his new job kicked in, so we dropped the COBRA. However, as the initial referral had been though the old insurance, the doctors' offices and the hospital kept referring to it, making a mess of the entire process.
The CT went quite well, and Gage recovered from the anesthesia quickly. The poor baby was SO hungry! I had been told to stop nursing him at 8 a.m., and as things were running behind on an 11 a.m. appointment, it was about 1:30 p.m. before I could feed him.
The next week I went in for the results. Dr. Cohen, one of the surgeons to be involved, showed me the results and had pictures taken of Gage's head from different angles to show its initial shape. They will do this at every appointment, to track any changes.
Dr. Cohen said the CT scan isn't so much to confirm the diagnosis as to let them see exactly how far the sutures have closed. We're happy to find out that there is currently only a small closure, although Dr. Cohen explains that once it starts, the suture closes kind of like a zipper, and that without the surgery, it would progress. As it is only one suture, it isn't likely to do more than give him an "boat shaped" head if left untreated, but treatment is still recommended.
I finally took some pictires of my own of Gage's head. Difficult as all this has been, I want to remember how he looks now. As you can see in the picture below, his head is rather elongated.
The surgery has been scheduled for shortly after Gage turns 3 months old. We are delighted and worried. Evevn with all the wonderful, positive information out there, it's still a major surgery. He'll be in the hospital for two days. He might need blood, and wouldn't you know the rascal has a different blood type than anyone in the close family in the area, and we only had a day to find a donor, as they forgot to tell us earlier to get him typed so we could get a donor. The odds are about 50-50 that he'll need blood, so it's not too bad.
We have two pre-op appointments. One is with Dr. Cohen, and the other is with the people who will be handling his helmet therapy.
My Experience with Scaphocephaly
It's such a shock to have your child diagnosed with a problem that requires surgery to repair... especially when you're talking about on an infant.
This is where things got serious. There are few things in life as difficult as watching your infant go in for surgery.
The DOC Band® Helmet
This is what does the shaping of your baby's head after the surgery. Believe it or not, my son missed it once it was gone.
Great places to learn more and get support as you go through a difficult time. Watching your baby go through all of this is difficult but understanding the problem and meeting other parents who understand can really help.
Copyright © 2003-2017 Stephanie Foster unless otherwise indicated
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