CT scan results

After many calls to the doctor's office, Bean's pediatrician finally called at 7:00 pm tonight with the CT results from Thursday at Primary Children's Hospital. She does have what they were looking for--it's called Craniosynostosis. I realize that there are a lot worse things that she could have, but it is a bit difficult still!


When Bean was born, we noticed that her head shape was rather elongated and grew out towards the back. I was especially concerned about it because her being a c-section, she would have had a perfectly shaped head, but since I went into labor, her pediatrician wasn't sure if her head had been shaped that way during the contractions and would just re-shape like they normally do, or if something else was going on. Here is a picture of her head the pediatrician told me to take so we could see if the shape was changing when I came back for her 2 week check-up.



I think her head actually looks even worse than this now...you can't tell as much in the first one, but the second one shows the strange shape more. She also has a ridge down the middle of her head where the bones have fused together--you can kind of see that in the 3rd picture. At her check-up at 6 days due to her being jaundiced, we looked at her head and after they measured the circumference and it was in the 90%, that's when I really thought something was wrong, because my boys' heads have always been in the 30%. So the next week, since nothing had changed with her head, the CT was scheduled.

The CT scan only took about 5-7 minutes to complete. She was all wrapped up in a blanket, they put foam around her head to hold it in place, and then they strapped her onto the table and put a strap across her forehead. She had just woken up and so was really hungry--luckily she took a pacifier and I was able to hold it in when they took the pictures. I wondered if something was up then also, because there were seven people in there looking at the pictures and talking and pointing at the screen. Then when I got home, I had a feeling again that yes, she probably had Craniosynostosis. After doing more research online, it seemed that her head shape was just so similar to those who had it as well, which seemed to confirm our thoughts even more.

You probably are wondering what the heck it is! Here is the best information that I could find: Craniosynostosis. Basically, it's when some of the bones in the skull fuse prematurely. Quoting from that website, the areas where the bones in the skull meet together are called sutures. When those fuse together, there can be no growth in that area. The inability to grow in that area leads to overgrowth in another area which causes the abnormally shaped skull. This causes problems down the line because as the brain is growing, it needs to be able to expand, and if the skull is fused, this cannot happen and can cause pressure on the brain which can lead to developmental problems or brain damage.

No one knows why it occurs. It could be genetic, but it often occurs sporadically. The article said most likely some accident happened early on in one of the child's genes.
Bean has the Scaphocephaly form, which is the middle ridge where the bones have fused together. There is only a one in 50,000 chance that they will have this form, according to that article.

So this is what will happen: I am supposed to call the Neurosurgeon and the Craniofacial specialist to meet with them next week. So I'll do that on Monday and then meet with them and they'll set up a time to do the surgery--most of what I read say between 2-3 months old is the best time to do it. So tiny! The Neurosurgeon removes parts of the skull, then the Craniofacial specialist reshapes the bones--of course I'm not sure on all of this, it's just what I've been reading online. I think the hospital stay is 1-3 days--some websites say 3-5 days. I am not sure whether or not she will have to wear the helmet thing afterwards--some websites say they don't, but a lot say they do.

So we will know more after meeting with those doctors mentioned above. I think I'm scared because they put her out and I am nervous about that with her being so little, and of course they are working on her skull bones right next to her brain. I feel very blessed to live so close to Primary Children's Hospital where they know what they are doing and I feel safe taking her there, but of course the mother in me is scared and sad if I think about it too much. I also feel blessed that she is otherwise a very healthy and happy little Bean--one of many nicknames for her around here:). And as always, please keep Bean in your prayers--we really appreciate all your prayers for us!