Baby Kohl was born on September 8, 2009 (which also happens to be my dad's birthday). Right away, Kaylie began asking, "Why is his head oval shaped?" Though I was concerned about the front to back obong shape of his head and the lack of a soft spot, all the doctors assured me that it was just from his position in the womb and that it would round out in time. My concern never really diminished b/c with no soft spot, how could it shift back into place? At his 2 week well baby visit, his pediatrician noticed that the shape of his head was not rounding out. His forehead bubbled out the front and the back was still very cone shaped. His concern was that the skull had prematurely fused. So he referred us to a pediatric neurosurgeon.
We went to the neurosurgeon on October 14 (ironically, Kevin's dad's birthday). Upon examination, Dr. Joseph immediatly diagnosed Kohl with Sagittal Craniosynostosis. I can now say, spell, and describe this so easily, but my first reaction was telling him that he was gonna hafta write that down for me to remember it. lol The sagittal suture of Kohl's skull had fused too early (durng the pregnancy) and would not allow his head to grow out to the side, but only from front to back. This would eventually put pressure on the brain as the brain would not have room to grow properly. I think Kevin and I knew that surgery was inevidable, as the shape of his head seemed to be getting worse instead of better, but knowing that major surgery would have to be done on such a sweet tiny lil baby in a matter of a few weeks was heartbreaking to say the least...I looked at the doctor through my tear filled eyes and just flat out told him that I didn't like this at all. I know it needs to be done, but I still don't like it. And Kohl had already been through so much, having to have a circumsision repair/stitches just a few weeks earlier. He described what the surgery would involve and though I tried to listen, my attention stopped and let my emotions take control as soon as he said the surgery was necessary. All I could do was cradle my lil man and take in all of his perfection despite the imperfect shape of his head. He wrote down the name of the diagnosis and told me to do my homework (which I'm pretty good at anyway) as I would need to be prepared for the swelling that would be involved afterward. He ordered a CT scan to confirm his diagnosis and later, Kohl's surgery date was set for November 18th. I asked him how many of these surgeries he had done and what the risk wasfor Kohl dying. He replied that he has done over 100 of these surgeries and while death is always a risk in any type of surgery, he has never lost any babies. The biggest risk would be that Kohl could lose too much blood and possibly need a blood transfusion. Thankfully, Kevin and Kohl are the same blood type, so Kevin has donated blood in the instance that Kohl should need it.
As devastating as it was to hear that our new baby would have to undergo such an involved major surgery, we are thankful after researching it out, that Kohl only has one fusion. Learning disabilities and syndromes like Apert's and Crouzon's are directly associated with multible skull fusions, which is NOT the case with Kohl. Thank Jesus for that!!! This is the most common and most repairable fusion and no brain abnormalities are associaed with it when caught this early!
I was thrilled after the CT scan that Dr. Joseph likes to put a copy of it on CD for all of his patients. So when I got home and reviewed it for myself, it was quite obvious that the center plates of Kohl's skull had fused. It's easy to wonder why and ask so many questions, but I have such a peace that God is in control of this...and that God will take care of my little caboose who I love so dearly and am so blessed to have in my life. I know that God has already used Kohl to work in our family and in our individual lives. Here it is, the day before the surgery, and I am holding up pretty strong. While I have done my best to prepare myself for what is to come tomorrow and the days following, I know that seeing MY BABY in that condition, head and face swollen and bruised with tubes all over, etc. will not come easy. I know that nothing I can do will adequately prepare me for that or the fear that will come after handing him over to the Doctor and the worry of waiting...but I am so very thankful for all of the prayers, all over the state, in other states, and even in Canada going up for my little man. I know he is in the best hands possible...God's hands, and I know that God will hold and guide Dr. Joseph's hands the whole time. I also pray for God's strength for myself. He has allowed me to be strong thus far, but I know I will need to be held most tomorrow and in the days to follow.
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