Craniosynostosis: My son’s story

One year ago today, my son had surgery for craniosynostosis. It seems like a lifetime ago. Since he was only 3-months-old at the time, I guess for him it nearly is!

At his two-month checkup, Charlie’s doctor expressed concern about the shape of his head (it was very long and narrow, like a newborn who just came down the birth canal). He suspected craniosynostosis, meaning a suture on his skull had prematurely closed. So, as his brain expanded, his head was growing lengthwise to make space. He needed surgery to open the suture so that it could grow all directions. It was not serious, mostly cosmetic, but it could cause problems if not taken care of and there’s too much pressure on the brain. Dr Ruge, one of the top ten neurosurgeons in the country we hear, confirmed that Charlie had saggital craniosynostosis in early November. We were both calm but concerned about his diagnosis. While the condition is uncommon, those who have it seem to have no problems with it after surgery. But surgery had to take place soon. We were very thankful that our initial appt with the neurosurgeon was moved up; it was originally scheduled for Nov 28. Praise God!

We arrived at Lutheran General hospital at 6am on the 20th, a Monday. Charlie handled everything well, but it was difficult for me to hand him off to the care of the nurses and doctors. He came out of surgery about 10am (a long wait for us!) and we were able to see him about a half-hour later. The doctor said that everything went well and he was progressing normally. We were so excited to see him! But he looked very sad in the little PICU hospital crib. I wanted so badly to hold him but he was more comfortable in the bed. His head and eyes were swollen, and he would cry when he’d try to open his eyes. We were able to go home on Wednesday late afternoon, so we were thankful not to have Thanksgiving dinner at the hospital. By then, he was looking so much better–not so puffy, and his eyes were completely open. He was finally smiling and in a good mood again. He really seemed glad to be home.

surgery.jpgThe surgery required an s-shaped incision along the top of his head (from front to back). We had to leave the bandages on for a while so he was looking a bit pathetic. We had several checkups but now we have to go just once a year around his birthday. The dr told us we didn’t need to treat him differently than any infant with a soft spot (it was just bigger than a usual newborn’s). So, we coddled him for about a month, then we worked hard to put him back on a schedule (this was a rough month or two because we wanted to spoil him and he was used to getting his own way). But now you would never know it. He is a delightful boy and I often forget about everything that we went through. He still has a scar but it is covered mostly by his hair–which is white-blonde! His head still isn’t perfectly round, but we are hoping it will continue to reshape as he grows. We are so thankful for all the people who were praying for Charlie and for us. Throughout the ordeal, God gave us “peace that surpasses all understanding.” People often commented “how well” we handled everything that was happening to our little boy. It is much scarier to think back at everything that happened (I mean, they cut my son’s head open!) and we’ve heard of not-so-successful stories since. So, sometimes it is harder for me to believe or deal with now than it was then. A true testament to God’s grace that he gives just what we need to handle whatever comes our way. My prayer for Charlie before, during and after surgery was rooted in Jeremiah 29:11.

“For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.” Jeremiah 29:11

See also: Charlie’s checkup


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