When Jackson was about 6 months olds his doctor mentioned that his soft spot on the top of his head was closed. With Jackson being my 5th child I had never heard anything about that happening. The told me as long as his head kept growing we were fine. Every time we went in for a check up, I asked about his head and was always told his head was still growing so not to worry (it was still growing because the sutures on the side were still open). Well it was growing but was looking long and skinny with a bump on the top that I would notice more when his hair was wet. So after 3.5 more years and reading about craniosynostosis, I decided I needed to be my child’s voice. I asked his doctor for a referral to have his head checked out. Thank goodness besides how his head “looked” he wasn’t having any other issues. So we were referred to a craniofacial surgeon that did an MRI and gave me the dreaded news that he indeed had sagittal craniosynostosis. I was in shock and didn’t know what to say or think. This doctor suggested we have CVR to correct it before he started having symptoms. We were then referred to a neurosurgeon to get his opinion. He thought since he wasn’t having symptoms that it was more of a “cosmetic” surgery. We decided at that time to do a pressure monitor to see if he indeed had pressure. We spent one night in the hospital while his brain pressure was monitored. The results showed he did not have pressure. So now we needed to make a decision… a very tough one. Whether to listen to the craniofacial surgeon and do the CVR or just let it go. I had that Mom instinct that he needed to have it fixed so we opted for surgery.
Jackson was 4.5 years old at the time of CVR. Talk about the biggest decision of my life??!! The craniofacial surgeon assured me that he would do fine. He said “we aren’t doing brain surgery, or trying to fix something from an accident. This is a controlled surgery. He will do great” My thoughts were this is what these guys are trained for…I will have faith in them. Man am I glad I did! The days leading up to surgery were the toughest of my life. I just didn’t show Jackson that I was nervous. We made tie dye shirts to all wear the day of his surgery and told him we needed to make sure we had room for his brain to grow and for him to get smarter! Once they rolled him in to surgery I bawled… it was the longest hours of my life. I was updated a few times throughout the surgery. The first update was from the neurosurgeon (the one that said it would be a cosmetic surgery if I did it). He said when he made the first cut to remove the first piece of skull the brain expanded! He said we definitely made the right decision, that it was only a matter of time that he would have symptoms. I knew as a mom to go with my gut feeling. He came out of surgery and the recovery we so smoothly. I can positively say we did the right thing for our son. He is one of the smartest kids in his class!