Today we took James to a specialist in Lexington and he was officially diagnosed with Sagittal Synostosis, which is the premature fusion of the sagittal suture that runs along the top of the child’s head. Below is a diagram of a typical infant and an infant with sagittal synostosis. You can see where the sagittal suture (the middle, vertical line) has fused in the second image. James’s case isn’t as severe as the drawing, which is why it wasn’t caught earlier.
We’ve wondered if he’s had this for months. My mom caught it first, early on, and if it weren’t for her, we might never have gotten a diagnosis. We asked our pediatrician about it, but he told us not to worry. But I did worry. So much that we scheduled another appointment with him and pushed for an x-ray. We got the x-ray, but again, he told us not to worry. So I made another appointment with a different pediatrician, who immediately referred us to Lexington. Thank God.
My sweet, perfect, beautiful boy is scheduled for surgery October 27th in Lexington. The surgery will consist of opening up the top of the head and rearranging the top of the skull so that his head will round out, so he won’t have a major cranial deformity as he ages, and so we won’t have to worry about developmental delays due to pressure on the brain or not enough room for the brain. If our pediatrician had caught this earlier, and referred us, it would be a much simpler procedure–they would go in and open up the suture that had closed. But he didn’t catch it, and the suture closure is too far gone for that now. This means that we will have the bigger surgery the 27th with two doctors (a neurosurgeon and a plastic surgeon), be in the ICU for 24 hours, and be in the hospital at least four more days. Below is an example of a child’s head before and after surgery.
I am broken into a million tiny pieces. My baby, my PERFECT baby, is going to have to go through surgery and I won’t be able to explain to him why it hurts, why he can’t eat for so many hours before we go, why he’ll feel sick and groggy and achey. I hate this. I hate every part of it. I hate that I can’t do this for him, that he has to go through it, and I’ll be helpless to sit back and watch.
I love my son more than anything. More than any person. More than any dream. More than ANYthing in this entire universe. He is my world, my heart, my everything. I want to take this from him, to make it all OK, but I can’t. I’m utterly powerless. So, in my state of having no power, no control, I want to ask for prayer. Please, if you pray, pray for James’s surgery, that it would go well, without complications, that it will work and not have to be repeated, and that he would recover quickly. Please pray for God to guide the doctors’ hands, the nurses’ hands, that God be with my boy as he’s being operated on. Please just pray for him in every way. I need him to be OK, to come this through perfectly, to be my sweet, laughing, happy guy again soon afterward. This feels like a nightmare, and the only thing I can do is pray, pray, pray, and ask for others to pray with me.
Vince and I are both scared, both terribly upset with the news, but we also have faith in God’s protection and in the two doctor’s who will be working on James in less than a month. Thank you to everyone who’s written us so far (even if you didn’t know what you were offering kind words for) or commented on the photo I posted earlier today. My family is so lucky to be surrounded by such beautiful people. And thank you in advance to anyone who will pray for James during this.