What does “A Cranio Journey” mean? Many things to our family. It means accepting there is something unexpected going on, that there was a chance we may never hold our baby again, putting all our trust into a surgical team, and letting go of any control. My oldest cub (Nate Bear) was born with a condition known as craniosynostosis.
What is that condition? Well, in basic terms, he was born with one of his soft spots closed, and his one suture fused. The below video explains it clearly.
This was noticed fairly early with Nate Bear. He was just shy of 7 weeks old. Pictures were taken and a referral was sent to SickKids in Toronto. We were seen quickly. My heart dropped, as I held my beautiful 4 month old, being told he would need surgery, to allow proper brain growth.
The next 4 months were a whirlwind of appointments, and emotions. Many ups and downs. Seeing my Nate Bear grow, and hit every developmental milestone. I questioned, often, whether this surgery was necessary. I knew it my heart it was. Even though he wasn’t showing pain, the intercranial pressure was building up. There was blood work, CT scan, forcing a baby to take iron drops, tears, stress, and many appointments. Then the day finally arrived. July 7th.
It was a Thursday. We had to arrive at 6:30am, to hand our six month old baby over to a surgical team. The surgery was being performed by both a craniofacial surgeon, and a neurosurgeon. Nate Bear smiled and laughed, when the craniofacial surgeon and nurses, took him away.
We sat, and waited. Waited for what felt like forever. 4 hours, of watching the status screen, the neurosurgeon came out. He told us the pressure was more than anticipated, and they had to change plans mid-surgery. But that all was going well. Then, we waited some more, and some more.
Our family waited, in the cafeteria, by the front entrance. Constantly waiting for updates. Then Donny & Marie Osmond showed up. Turned out they were visiting SickKids, that day. Of course, my mom and Aunt were all over getting pictures. It helped take everyone’s minds off, the what if.
Finally, after another 4 hours had passed, both surgeons came out. Nate Bear had done great, and was on his way to the PICU.
We spent the night in the PICU, and Nate Bear’s bleeding hadn’t stopped. My heart dropped when they told me, that if his bleeding didn’t stop, after this next transfusion, we would need to do exploratory surgery. We prayed even harder. The bleeding stopped, and we were moved from the PICU to a regular room. I still hadn’t been allowed to hold my baby. The pain of seeing your baby, in pain, but not get to comfort him.
After a couple bumps in the road, we were finally able to go home, after seven days. 3 days longer than we had been told. But we were finally on the other side!
We are now 9 years later. My beautiful baby boy continues to amaze me, every day. He is a strong and resilient child. And very determined. Which is probably why, the only thing left as a reminder, are his scars. But we call them his Warrior Badges. He is a Cranio Warrior after all.
So, for any parents facing craniosynostosis, or any other medical conditions, know these babies are strong, are warriors, and are brave. Also, know there are parents offering support, advice, and just an ear. Just search on Facebook, and find a group. Also, visit Cranio Care Bears for more info, success stories, prayer chains, and even success stories! Summer and Shelby have provided us cranio parents with an amazing resource.