First of all, she did very well. She did much better than we expected without being able to eat for a couple of hours. Unfortunately the dr did not send the orders down for the scan and we had to wait longer than we should have, but she was a doll. Once they got the medicine in her, she was fighting it very hard, but snubbed herself to sleep. Afterwards, she did just fine, and Chad got to go back with her.
Dr. David gave us the results (almost 3 hrs later...) and was overall pleased with them. The "humps" on her head are fine, and are just the way God made her (to use the drs words, I like a Christian Doctor!!!) so she doesn't want to use a helmet to fix them. As far as her neurological health and facial features are concerned, Marcy has no bridge of her nose. The bone just isn't there, and it never formed inutero. It may or may not be related to her AMC. She told us the odds are between 1 in 2000 to 1 in 5000 for the exact location. There is an actual hole in her skull where her bridge of her nose should be, right between her eyes. That is what makes her eyes look so wide and spaced further apart. The CT scan showed her eyes were perfectly normal but look bigger/wider because of the hole. Chad and I saw the actual CT results, and you can see the hole. It looks like a little bbgun hole in her skull.
It is called encephalocele literally meaning "hole in the head". There is nothing we can do for it right now other than to protect that spot on her from harm, since when there is an open part to the skull, there is always risk for the brain being exposed or "slipping through." Because of the location of the encephalocele, odds of any harm coming to it is really rare which is good for us. The bad news is that they can't fix her skull until she is about 3. They say she is growing too fast until then, and if they tried to fix it, it wouldn't be successful because the bone would not have time to fuse together.
Dr. David is going to check her every 6 months and keep a close eye on her until she is a candidate for surgery. When she does have the surgery, they will take bone from the back of her skull and fuse it to the hole to seal it. Then they will take more bone and build her a bridge of her nose for looks purposes. They will have to put a metal screw into that bone, but it shouldn't cause problems. Dr. David said since it was a neurosurgery, she would require about a 6-10 day stay at Brenner to heal and keep a close eye on swelling around the brain, etc.
Overall, she is not worried a bit about her neurological health, and we just need to keep an eye on her protection more than anything until it is fixed. Because of the hole, she needs to be kept as healthy as possible, because sickness can always cause the brain to swell in cases like meningitis, and we would not want her brain to swell for any reason.
And you know, even if though there is something there, it could have been much worse and we're praising God for being so faithful to all our prayers.
Here is a link so you can read more about encephalocele. If anyone has similar stories about encephalocele and AMC I would be interested to hear.
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