Seven Hours | A Craniosynostosis Story

Nearly one year ago, on December 12, 2014, I woke up earlier than I like. I am not a morning person. In fact, I typically stay up until hours that most people don’t see. I like the silence. I like the night, even though I am actually afraid of it. Some might say I’m crazy. And to that, I say, I probably am.

On this day, though, I dressed my almost eleven-month-old baby in comfortable, easy clothes. I made my coffee to go, dressed with some crazy ‘Coffee-mate’ creamer that I should no longer use but I can’t seem to get rid of. My husband and mom and dad helped me get out the door. We loaded our little Ari into his car seat just like any other day. And we had our bags packed for a trip that we didn’t understand.

We arrived at LeBonheur Children’s Hospital in Memphis, Tennessee before the world was awake. We were in awe of the pretty lights and decorations that we saw. While we were nervous, it sure did make us feel a little better.

At check-in, everyone was kind but still waking up, also. After some paperwork, we waited with other nervous, just awake families. I can only believe they wondered what we were going through, too. And the whole time I couldn’t help but think, “we’re lucky, right?”. This isn’t cancer. This isn’t death. This isn’t permanent. But I can’t help but feel sick — and totally alone — and more terrified than I have ever have been.

Soon, someone came to take measurements and vitals and all of those other things that come with this kind of thing. After that, we were able to choose a special toy from the toy hallway that LeBonheur is known for before letting your little one go to surgery. I kept thinking, “How does a not even one-year-old child choose the right toy in this situation?”. But I saw a sweet little fox that just seemed fitting for wee Ari and for me, and we went with it.

After the “fun” of choosing our toy, we were escorted to an area that was full of children awaiting surgery. Big kids, tiny kids, babies — I didn’t feel as alone as I once did but my heart broke even further. While my child was too little to explain what was about to happen, I thought about the four-year-olds, and ten-year-olds, and all others that were awaiting the same fate. How do you tell them and comfort them? Thankfully, we received more toys and fun stuff as we waited. It was a small, distracting gesture that helped.

The doctors and nurses asked who would like to escort Ari to the operating room and before my husband could answer, I replied boldly, “I am.” I was offered a hat, a mask and a full body suit that reminded me of something I had seen on CSI. I was ready. I was in a haze. What I really wanted to do was fall to the floor and cry.

I carried sweet Ari in his gown and various tubes with the nurse to the cold operating room. I saw what was ahead. My stomach dropped. But I kept smiling. I kept laughing. I showed my baby that it was going to be okay even though I wasn’t sure myself. They put on the anesthesia mask and told me to leave. And that was when I kind of died a little.

For nearly seven hours, we sat in the waiting room. For nearly seven hours, I felt like I was dying. For nearly seven hours I received updates from amazing nurses and doctors about his progress. And for nearly seven hours, I thought my baby might not make it and I might not either. And I was truly sick, afraid, nervous, and insane.

You see, my little wee man was born with a birth defect known as Craniosynostosis. It affects nearly 1 in 2,000 babies. No one tells you about this. And you usually can’t see it before you meet them. We are all born with what are called “sutures” in our head. It’s part of our soft spots and our skull development. Cranio babies are born with one or more of these sutures closed already and if you don’t fix them, it can result in severe headaches and pressure, malformation of the face and head, development issues – essentially, scary stuff and not at all simply “cosmetic.”

At the end of this surgery, after touching base with both the neurosurgeon and plastic surgeon, we were able to see our little man. He was tired, he looked different, he was full of tubes, and he was cut up, but there was no better moment than when I was able to see him sleeping soundly in his bed and able to hold him. SWEET RELIEF!

The days that followed weren’t easy. Yes, he was better. Yes, this was helpful. But he was in pain. His head had been redeveloped. The nights were long and the days longer. My husband and I stayed with him the whole time. It was Christmastime, and people kept bringing things for our family. I’ve never felt more grateful than I did when I spent those days there at LeBonheur. We were in the Neuro ICU next door to children that probably would never have the positive outcome that we were likely to have through this. I felt more humble than I ever had through all of the pain, and I was eternally grateful.

Just a few days later, we were able to go home. And while it wasn’t easy dealing with the swelling, the magnitude and the scariness of it all, we knew we were lucky. A simple surgery would (hopefully) correct our little baby’s head and life would march on.

Looking back, I cannot believe any of us made it through that day, but today, through a weird lumpy head, “bionic man” head parts, and one of the busiest and bravest little dudes I have ever met, I know we are good. Ari is absolutely fearless and right now, I feel like I’m right there with him.