As we celebrate twelve years post-op, it feels like we are so far removed from that day.
But it was real. The fears were real, and the emotions were real.
I feel that it is essential to share our story about craniosynostosis for understanding and to bring awareness. You see, as a parent of what we thought was a perfectly healthy baby boy (number two for me), our world turned upside down on a Saturday morning with a visit to the on-call doctor for what we thought was an ear infection.
It only took one visit with Dr. Dean at Pensacola Pediatrics for us to find out things were not as they seemed with our four-month-old. Dr. Dean did his examination and then asked if anyone had ever mentioned craniosynostosis.
That was a long word and one I had never heard. Then he told us it was a congenital disability.
Wait, WHAT?
We’d had monthly visits for weight, head measurements, length; everything was progressing normally.
Or, so we thought.
After that, I don’t remember much for a while. Fear set in, and I was totally numb.
Dr. Dean referred us to a Pediatric Neurosurgeon, Dr. Alexa Canady, a Pediatric Neurosurgeon at Sacred Heart Children’s Hospital. I do not believe in coincidences, and to this day, I know that meeting Dr. Canady was no coincidence. When Dr. Canady arrived in Pensacola, she initially considered herself retired. However, after meeting local doctors and realizing the need for a pediatric neurosurgeon in the area, Dr. Canady decided to join the staff at Sacred Heart Hospital, working part-time.
I truly believe it was divine intervention.
She took one look at my then four-month-old son and knew within an instant what had to be done. She explained the surgery in a very matter-of-fact manner (most of which I heard in the Charlie Brown teacher’s voice), saying she wanted to perform the operation within the next month after he turned five months old. There would be one surgery called a Cranial Vault Repair. We would have a couple of follow-up appointments, but he likely wouldn’t need another surgery after that.
Looking back, the lengthy labor and trouble I had during childbirth was actually due to Tyne being born with craniosynostosis. I was in labor for 14+ hours, pushing for the last two and a half. It seemed like an eternity.
When a child is born, the skull is not fully formed and has five very distinct bones. When Tyne was born, his side (parietal) bones had fused along the top (sagittal) suture prematurely. As his brain grew, his frontal bones and back (occipital) bone started to move, and it gave him a slightly peanut-shaped head.
It also gave his eyes a squinty appearance that we hadn’t noticed until after his surgery was over.
August 12, 2009, was a long day. We sat in pre-op, cuddling and talking to our baby. He was so happy. Everything became very foggy after they wheeled him back to the operating room/ We were in the Sacred Heart Pediatric ICU for five days. Only one parent was allowed to stay overnight at a time. I stayed during the daytime to be fresh for the doctors’ rounds, and my husband stayed overnight (during the every four-hour vital visits).
By that time, the edema in his face was so significant he didn’t look like himself. It was heartbreaking. I had been lying in the crib with him every chance I got to be close, so he knew I was there. I was unable to pick up my sweet baby until two days post-op.
What a helpless feeling!
We looped a Jim Brickman CD in our PICU room to help soothe him during his stay. That continued after we got home in his nursery to help him sleep at night. We went home after six days.
I will never forget Dr. Canady and how she treated him as if he were her own. If you know her, please share this story with her. I have not seen her in several years, but she will always have a special place in our hearts.
She is a difference-maker, and I will forever be grateful to her.
Tyne has become aware of his scar and knows all about his surgery. If you ask him about his “cool scars” you may get the truth, or you may get the shark attack story. He has an awesome T-shirt a friend made for him that says, “Scars are like tattoos with better stories.”
We have dealt with some ADHD and social anxiety, and manage it all on a day-to-day basis. With the help of his excellent teachers and his wonderful pediatrician, we keep an eye on both of those issues and talk about them when necessary. We have a very bright kid on our hands, and I know that God has big things in store for him!
He is entering the seventh grade this year. Time seems to be going by so quickly. Tyne is sweet and sensitive. He knows what he wants and what he doesn’t like, and he is not afraid to vocalize that. He has earned a Blue Stripe in Karate, is an avid gamer, and enjoys playing golf with his dad.
I believe that we go through experiences in life to help others go through what we have experienced, which is why I am sharing our story.
September is Craniosynostosis Awareness Month.
One of our favorite organizations to give to is Cranio Care Bears. You can find out more about this organization here.
The awareness ribbon is Purple. Possibly another reason purple is my favorite color.
