New here! - Our story... LONG

iVillage Member
Registered: 05-22-2003
New here! - Our story... LONG
Thu, 05-22-2003 - 10:56am
My son, Nathan, was born with Craniosynostosis. It is when two or more of the plates that make up the scull fuse permaturely. The fusing is not supposed to start until they are about 1 and if it happens too early, it does not allow for the brain to expand in the way it should and can cause brain damage, hearing & vision problems and it also causes the head to be misshapen (such as in Plagiocephaly). Nathan was dx at 2 weeks old and had corrective surgery on his 8 week birthday. There are a few options on the surgery. The most common one, involves an ear to ear cut across the top of the head and cutting the bone and in many instances, reshaping the scull with foregin materials such as metal plates, pins, etc.- the second one is to cut ear to ear and simply remove a strip of bone. These two are quite invasive and the surgery can take several hours and usually require a 3-4 day stay in the hospital and a transfusion. The third one- the one we chose- only involves a small incision (Nathan's was less than 2 inches!) and simply removing a strip of bone. Nathan lost LESS THAN a TEASPOON of blood! No transfusion needed! Praise God! He was in & out of the OR within 40 minutes and was n the hospital for less than 24 hours!!!!!! It was awesome! If I ever had another child with the same thing, I would definitely go this route again! We had to travel 6 hours to have it done (WELL WORTH IT!) as there were only a few surgeons in the US doing this procedure then. Our surgeon is the one who developed the technique! YEA for Dr. Jimemez!!!!!

He had a custom made helmet (made just for the surgeon that did the surgery- not like the DOC band- way heavier) that he was supposed to wear 24/7 with a short break every 4 hours for a year but he didn't adapt to it well. He was wresteling with reflux at this time too so that just added to the problems. We didn't put it on him much but THANKFULLY his head IS shaping up pretty well without it! His reflux is under control too :)

If anyone want's more info on craniosynostosis or on the surgeon that did our surgery, go to this address! He is an amazing Dr.!

Nathan is now almost 22mos old and does not speak more than a couple of very crudely spoken words. He also has mild sensory intergration dysfunction and up until last week, had refused to eat from a spoon. He only likes crunchy or form things but we're working on that. Just last week he ate yogurt and sherbert from a spoon! :) the yogurt is a double bonus because he has trouble with dairy and (knocking on wood) this did not seem to bother him!!!! :)

He receives speech/feeding therapy and occupational therapy and we are seeing a geneticist and will soon see a developmental pediatrition with him. The geneticist has tested his chromosomes and they came back normal so he will likely look at specific genes next. He also discovered that Nathan's head has not grown at all in 8 months- :( He thought it might have been the craniosynostosis again but the CT showed normal so the next thing to look at is the brain. :( I try not to worry as long as I keep seeing improvement in Nathan but every now and again, those thoughts come into my mind.

Well, there you have it- I told you it was long! ;)

I'm looking forward to getting to know all of you and you're special blessings from above :)