Our son Caleb was only a few months old when we had our appointment with the neurosurgeon. It feels like all we did the first year of his life was see one specialist after another, each trying to solve some part of the mystery that was Caleb.
My memory is a little foggy on why we were referred to the neurosurgeon but I vaguely remember it had something to do with Caleb’s unusual features. He had two fontelles and very prominent cranial ridges at birth. There could’ve been more reasons but we were bounced between so many specialists it’s hard to keep all the facts straight.
The one memory that’s crystal clear was that the neurosurgeon recommended reconstructive skull surgery. He told us Caleb had borderline proptosis and surmised the shape of the skull was the cause of his condition. He theorized as Caleb aged the proptosis could worsen and lead to vision problems.
I was shocked. I had no idea what the neurosurgeon was going to recommend but reconstructive skull surgery was the farthest thing on my mind. I had seen a child in the waiting room with proptosis and I can understand why this kind of surgery would be recommended but Caleb had borderline proptosis. He was in the gray area of almost having proptosis but not quite. He was certainly not as severe as the child I had seen in the waiting room.
Every emotion inside of me was throwing up red flags and screaming the treatment didn’t make sense, nothing was adding up. Reconstructive skull surgery seemed too drastic, like buying a new car every time the ‘Check Engine’ light comes on.
Before I could even get over the shock, the neurosurgeon casually rattled off the risk factors as if he were placing a drive-through order. My emotions were in frenzy mode now.
This was a neurosurgeon. A specialist. He’s seen hundreds of cases, probably read a lot of medical journals, and sat through countless lectures and conferences, so he’s thoroughly knowledgeable. He wasn’t randomly making a recommendation, he was basing it on several factors like personal experience, the collected knowledge of peers spanning centuries and his intellect. He believed this was best treatment for Caleb.
I, on the other hand, know nothing about cranial issues. However; my gut was telling me reconstructive skull surgery was too extreme. So we got a second opinion from a plastic surgeon. They also specialize in reconstructive skull surgeries. He understood the neurosurgeon’s concerns but after doing a thorough exam of Caleb’s face, he felt Caleb’s eye sockets were fine and his eyes sat perfectly in them. Based on his observation, he believed the proptosis was a genetic condition rather than a structural issue with the eye socket. I was beyond relieved! And my intuition was right!
What I’m learning
As a mom of a son with a disability, I’ve had a lot of statistics and facts thrown at me even before Caleb was born. Sadly, most of them were very discouraging. A lot of them were based on hypothetical situations and played into fear. If I had listened to them and allowed fear to manipulate me, Caleb would never have been born.
As I learn to sort through all the information that I’ve been given, I’m learning to trust my instinct, to listen to the ‘still small voice’. If something doesn’t sound right, I need to look into it and not take it at face value. It’s still a work in progress.
But I’m thankful I trusted my gut and got a second opinion about the reconstructive skull surgery. In our case, the neurosurgeon’s prognosis was wrong. After Caleb turned one we received his official diagnosis, at which time we learned the shape of his eyes was a part of his genetic condition. The plastic surgeon was right, Caleb didn’t have poorly formed eye sockets. I shudder to think what would’ve happened if we hadn’t listened to our instinct and gone ahead with the reconstructive skull surgery.
Who gives intuition to the heart
and instinct to the mind?