Neurosurgeon Meeting

Alrighty then, I have loads of info about what will be going on with Bailey, 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) 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. 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.

SO, 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.