At our son Canaan’s birth, his pediatrician diagnosed him with Sagittal Craniosynostosis. Before I tell our story, I am blogging this so that if anyone is like us and upon hearing the news immediately Googled the words “Sagittal Craniosynostostis”, they might stumble upon on blog and find it encouraging and helpful.
So our doctor went on to explain that it seemed like the sutures in Canaan’s head were prematurely fused together- laymen’s terms: he didn’t have the huge soft spot most babies have when they are born. If he did have Sagittal Craniosynostosis, it would mean surgery for him in the future. For right now though all the doctor wanted us to do was wait. She wanted to take a look at his head in 2 months.
So we waited. We enjoyed Canaan, our family & friends and one another in the first few months of our baby boy’s life. And we prayed. Not only us but our friends and family were praying as well. We all asked the Lord to heal Canaan, and to more importantly save him at a young age that he might walk with the Lord for the rest of his life. Those 2 months were dear to us- we were and have been truly surrounded by amazing people, amazing family and friends who have been support and encouragement to us. The reality we came to concerning his head is that no matter if the Lord chose to heal our son or not, without Canaan coming to know the saving grace of our King, it doesn’t matter if he head is healed because his heart would not be healed at all. We also came to the reality that God made his head just like it is… and God knows what he is doing in our lives. This was not some mistake of his. In those two months, we noticed Canaan’s head did have a unique shape. The back stuck out and was somewhat pointy so when he was real little it was difficult for him to face forward while laying down, rather he had to lay with his head facing one side or the other. And all of those cute infant hats didn’t fit so well. Below you can see the odd shape, but also he always sleeps like this because he can’t keep his head straight forward. Other than those things, he was and is a normal, healthy baby boy.
Canaan turned two months old, and it was finally time to go see our pediatrician. Our Dr. confirmed her diagnosis that he did in fact have Sagittal Craniosynostosis. She referred us to Cook’s Childrens in Fort Worth.
We called right away to make an appointment. It was set for January 18th. January 18th came, we were able to meet the surgeon who will actually being doing the surgery to correct Canaan’s Sagittal Craniosynostosis. Canaan just adored him, laughing and smiling at him the entire time. The surgeon requested that we get on his surgery calendar as soon as we could so that he could perform the surgery sooner than later.
That brings us to today…. Canaan’s surgery is set for Thursday March 8th at Cook’s Childrens Hospital in Fort Worth.We could not be more thrilled that they were able to get us in so quickly! If all goes as the doctors are planning, Canaan will be in the PICU for two short days and then stay in a regular room for 3-5 more days. After that, we should be able to return home.
Below are some great resources that have been helpful to us in learning about Sagittal Craniosynostosis:
our favorite video and blog (both by the same family):