Neurosurgeon Meeting

Alrighty then, I have loads of info about what will be going on with Bean, so here it is if you wanted to know!

Dr. Cambrin is the Neurosurgeon who will be performing the surgery. He said there is debate among Neurosurgeons as to what the rate of people who have damage done if they don't have surgery, and I guess some say 15%, but most say 2-3%. He said it is just a hard thing to prove that anyone has anything wrong with them due to their skull being fused and pressure building up. He did say that if more than one place was fused, that the chance of brain pressure increases. But, with that being said, he realizes that of course no one wants to chance being in that percentage of people anyways.

As time passes though, if the suture that is fused is not removed, head deformities and facial deformities just get worse and worse. Eyes become crooked, there becomes dents by their eyes, the nose can be misshaped, the jaw misshaped, the mouth, the ears, pretty much if it's not fixed, they will look really different. That would obviously alter their life by the way they were treated socially and so they recommend doing the surgery anyways even if there wasn't a risk of the brain pressure, just because it could change their whole life based on the way they look.

Her surgery options were one of three choices. Since she is so young, all three options were open to us.

1) This one was the biggest deal--100% chance of blood transfusion. They would remove the whole skull and reshape it all and then place it back around the brain. Not recommended unless they were over 4 months old and just a big deal.

2) CVR: Cranial Vault Remodel. They would make one incision from ear to ear, they make it squiggly this reason--the hair parts if they do what they used to, which was one straight incision. The squiggly incision helps to hide the scars and helps the hair not fall funny on the head if they go swimming or something like that. Kind of funny huh! There is a 15% chance of a blood transfusion in this case. This one is the one they've been doing for years. After removing the top fusion (where the ridge is) and leaving a 3 cm gap, they then cut finger like shapes into the sides of the skull and into the back so as the brain grows, it rounds out nicely. This one has immediate results and just gets better with time. A helmet is not required. The hospital stay is 3 days. Their head will swell up like a balloon he said, and their eyes will swell shut for a couple days. They will be on lortab most likely, but maybe morphine. After the 3 day stay, they are sent home and should be fine on Tylenol, although they will be more fussy for a few days.

3) This is the newest way of doing it, the least invasive, called Endoscopic. Two smaller incisions, and then they cut the finger-like things into the sides with a scope, but not as deep, so the results are not as immediate and they don't really know any long-term results. They would have to wear a helmet until they are a year old, and she would have to wear two helmets in her case since she's so young. Insurance may or may not cover the helmets. 13% chance of blood transfusion, little bit quicker recovery than option #2.

He recommended option #2 saying if his kid had it, that is what he would choose. You get better results with the second choice, and you don't have to wear the helmet. They've been doing it for years and he thinks it is the best option. I asked why they would do the third option, if it was the Neurosurgeon's choice normally, or if the parents chose it because they were scared of a more major surgery, and he said almost always it was the parents' choice because they didn't like the idea of surgery. He also said the other Neurosurgeons would most likely be more for the 2nd option as well. He also said that he strongly recommended getting surgery, that parents who chose not to always regret it 5 years down the line because of how different their child might look.

Her surgery is set for November 20th. Since she is so little, she will be the first patient of the day most likely with the no eating after certain times and all that stuff. They simply have to wait for her to get old enough that it isn't life-threatening. He said we'd notice even in this next month her head shape getting more and more abnormal, more pointy in the back and her forehead might start to bulge out. But we just have to wait for her to be a little older.

The greatest risk is blood loss, and at her age now, she only has 6 cups of blood, but by 2 months old, they have 14 cups, and he didn't want to wait until she was 3 months old because the earlier the better with the bones being softer the younger they are. The next biggest risk is a main blood line beneath the leather-like covering on the brain. They also sometimes cut into that leather covering and have to sew that up. But, being Neurosurgeons, they are completely comfortable with working on the brain, so if those things were to happen, she'd be in good hands--which is why they have them do it anyways!

He said it's just bad luck, no one really knows why it happens.

Everyone asks how I'm feeling about it. When it gets closer, I'll probably be more in freak-out mode, but I do feel she's in good hands, and also, in going to Primary Children's Hospital, you see all sorts of children with things that are seriously wrong with them, so it actually makes me feel grateful when I go there and my heart goes out to those families.

Little Update

We have an appointment with the Neurosurgeon and the Craniofacial specialist next Wednesday, the 15th, at 11:15--again at Primary Children's Hospital. So we won't know more until then. Some of the questions popping up from some of you and amongst ourselves are how many places of her skull have fused together--if more than one at all--how long until damage would have actually taken place, will she have to wear the helmet and if so for how long, what would have happened had we not caught it now, will she need a blood transfusion, how soon the surgery will be obviously, how long the hospital stay will be, etc. I mean seriously, I really wonder what has happened to people that they never caught this--how long does it take for enough pressure on the brain to build up and cause problems?

If there are any more questions you and I have discussed, or you are wondering, then please post a comment because I really really want to cover everything that we are wondering about at this appointment!!!

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!

2 Weeks Old!

Tomorrow we will be going to Primary Children's Hospital to have a CT scan on Bean's head. I won't go into too much detail unless there actually is something going on since I don't want anyone to be alarmed, but if there is something going on, it still is not that serious and can be fixed, but it would be a bit sad and scary. So...keep us in your prayers please! I'll update on it later after we know the results!