My beautiful Iron Will
We waited 8 long years. I had convinced myself we would never add another child to our family. We cherished what we had and wrapped our world around our tiny family. As surprising as the first, we found out we were having Mr. William. His name was set in stone long before he arrived. Elizabeth Emma if he was a girl and William Jack if he were a boy. Family is everything to us so naming our children after our loved ones just seemed the natural choice. Cody James was named after my father and William Jack after my husband’s father and step-father. A few weeks before William’s arrival, we were lying in bed talking about the arrival of our new blessing. Chad mentioned he couldn’t fathom loving anyone as much as we loved Cody. Cody at this point asked if we had ever considered adoption? We still laugh today at this innocent question. The truth, it was love at first sight with our William. I settled into our new angel with ease. Each day waking to him was pure joy. My heart full with the constant chaos my boys can bring. I always thought I was meant to mother girls, yet my world seems richer with house full of boys.
When I look at William’s 6 month picture it seems ridiculous I was the naysayer to his condition. I was blissfully blind to any abnormality which existed. Chad on the other hand was adamant something wasn’t normal. He pushed for the radiograph that confirmed torticollis and is the reason he was eventually diagnosed with Infantile Scoliosis. My husband would insist I look and feel yet when I would get home from work, all I wanted to do was nurse my beautiful boy and cherish the family time. Chad was overreacting in my mind. Nothing was wrong with my boy. He sat crooked due to age. His muscles were still little. It came to the point where I thought my husband was trying to see something. It wasn’t until a physical therapist pointed out William’s spine disappearing under his muscle on his back & insisted Chad take him for a second radiograph, I would finally accept there was something not right.
People point to others to say they saved my child, I believe 4 people saved our son. Chad for insisting our pediatrician was missing something, the physical therapist for validating his concerns, Dr. Peter Sturm for starting casting & Dr. Kim Hammerberg for taking over his care and never giving up. (You don't see my name in that listing-Oblivious to thee, that was me~) Upon confirmation on a curve by our local radiologist, we were referred to Peyton Manning Children’s Hospital in Indianapolis to see Dr. Bellflower. I have written many times about this experience and have always left out two very important names, the doctor and the hospital. I am not going to omit anymore when sharing William’s story. I have nothing to hide and quite frankly it may save another child from what was a waste of our time. 7 hours of my life I will never get back. Sorry I digress, we arrived at Dr. Bellflowers office, x-rays in hand. William dressed in a tiny skeleton shirt to add levity to the weight of this appointment. I had started research and knew my statistics. Our local radiologist read William’s film at 28 degrees, possibly positional. We wanted to see what the expert thought. Dr. Bellflower entered the room and introduced himself. He pulled up the back of William’s shirt and glanced for less than a minute. He then proceeded to tell us William has Infantile Scoliosis but fortunately for us 80% of these cases will self resolve once he begins to walk. He suggested we take him home and work on getting him mobile. He would see us back in 4 months for a re-check. Chad asked an arsenal of questions regarding treatment options, bracing , surgery, casting. He was almost giddy when explaining how he can remove ribs and attach hardware to correct his spine. In closing I asked about casting. He confirmed they didn't have a table at their hospital and have seen mixed results with casting but told us if William’s spine was worse in 4 months and we wanted to try casting, he would refer to Chicago Shriners.
We left Peyton Manning Hospital $200 co-pay lighter and just as confused as when we arrived. One thing we kept replaying was the name Shriners Hospital for Children-Chicago. If he was going to refer us to Chicago in February, why wouldn’t we go on our own now? We couldn’t see why we would pay one doctor to refer us to another doctor. Thanks to my cousin, Julie who knew a local Shriner who was willing to sponsor William, we fed-exed his application and photo the day after returning from Indianapolis. One day later I received a call from Linda Cree, RN at Shriners Hospital, “bring him up, we’ll see him.” A week later we were sitting in what would become our second home for the first time. Chrissy & Amy, Jackson and Makenna’s Moms, were on speed dial at this point. Jackson was originally scheduled the same day as William but because of Adam’s schedule they came in 2 days earlier. By our Friday appointment Jackson was seen for his consult and casted the next day. We really weren’t sure what we were walking into!
We would receive the answers we sought this day, even though I still sat in the room trying to convince myself his x-ray looked better this time. William’s curve once misread at 28 degrees was actually 67 degrees. The rest of the conversation was digested through tears. How did we go up 40 degrees in a week? The answer, we didn't. Both films showed near 70 degrees, the original was misread in our hometown and never read in Indianapolis. Waiting was never an option for our 10 month old baby. A week after leaving Chicago he would undergo his MRI which cleared congenital abnormalities and confirmed idiopathic infantile scoliosis. He started casting 11 days after his first consult, November 17th, 2010.
William is 3 ½ years old and 12 casts into his journey. Dr. Hammerberg has been able to almost completely resolve the immense rotation of his spine and he holds out of cast around 18 degrees. William’s initial numbers and age have always placed him outside of the studies published. We were initially told this would give him time to grow prior to surgery. Now his numbers, as they stand, have placed him outside surgery. So many surgeons find it miraculous what they can do with hardware and screws, casting surgeons find it miraculous what they can do in their absence. I, the naysayer, have created bonds with the fellow founding families and less than a year into our journey formed the Lucky Cast Club to insure no one is alone in the process. It seems ironic the same person who refused to acknowledge the obvious would make advocacy my life’s work.
It’s still my hope to one day have scoliosis checks added to well-baby visits. Torticollis being a common theme to so many of the stories shared, I would like to see a spinal x-ray added to the check list when diagnosing Torticollis. In cases like William’s and so many other kids with un-resolving torticollis, follow-up radiographs would save time and possible diagnose infantile scoliosis early. We found William’s torticollis to more likely be spinal rotation causing mirror symptoms. YOU will most likely be your child’s best advocate and first line of defense. If you live in Chicago, seek out Shriners Hospital for Children-Chicago as your first opinion. Until William’s journey started, I was under the assumption the biggest children’s hospital must be the best. After traversing the road to treatment I have found experience carries more weight in the world of Infantile Scoliosis. Shriners Hospital for Children-Chicago specializes in treating Infantile, Juvenile & Adolescent Scoliosis treatment. Chicago, give your family the gift of the best!
My boys are truly amazing treasures. They are kind and courteous, well at least my oldest is. I often have people tell me you did a great job with your kids. The truth, they did a great job with me. I am who I am because of them.