My name is Hayden Shock, I am 30 years old. I was born with Goldenhar Syndrome also known as OAV- Ocular Auricular Vertebral. This disorder of mine is in the VA Registry as a result of my father's time in the military during Desert Storm; hence I am identified as a Desert Storm Baby. I have two of the three OAV disorders-I was born with scoliosis(vertebral) , and I am also Deaf (auricular); my face is asymmetrical with a smaller mandibular and a missing ear.
For 18 years, I would make annual trips to see my spine doctor's so they could continue to monitor and measure my scoliosis. Often I would have to go quarterly if I was going through growth spurts. I had hemivertebrae sporadically located in my spine, the curves looked like a snake. I remember my spine surgeons saying that as long as my head was aligned between my hips that the curve can do whatever it wants. It was not until the curve started to "twist" that concerned my spine surgeon. This progressed rapidly during
puberty. The twist is what caused me to decide to have my spinal surgery.
I had several spine sections that were between 16 degrees to 30 degrees in curvature but like I mentioned, it was based on my head aligning directly in between my hips. When it started to twist more and more, I started to feel the discomfort whenever my shoulder blades touched the back of a bench or chair in the classroom. I would carry a pillow with me to the classrooms to put between my back and the chair to ease the pain. Also whenever we'd go out, my mom would have her arm behind my back just so I would feel more comfortable. My head was no longer aligned over my hips, my body was twisting to the point I could not comfortably sit without my right shoulder blade touching the back of my seat causing severe pain. My internal organs would be at risk of becoming tangled. My body was becoming very distorted.
My parents wanted two pediatric spine surgeon opinions and a decision was made. January 3, 2011 in Washington DC, when I was 18 years old and a senior in high school my spine was fused from my lower portion of my neck to the top of my tailbone. Two rods located on each side of my spine stopped the twist and locked the curves in their position. My spine was never straightened- it was too risky to remove the hemivertebrae or even attempt to straighten my spine. My back and neck muscles had to be retrained to move within the limits of the spinal rods.
I was always an athlete, I played a lot of sports growing up. This was devastating to know that I might have restrictions in sports. Granted I can no longer be tackled in football but I can still play catch with my dad and brothers. The first 3 months were pretty difficult, a lot of pain, a lot of limitations in movement. I continue to play sports today. No doubt it was a challenge but it was about me making huge adjustments in my life. It was all about strengthening my body and using different muscle groups to increase my mobility. Many physical therapy sessions to learn techniques to gain strength and flexibility. Hint...it is all core work.
I enrolled at Gallaudet University in my freshmen year, I did not play any sport but I felt great, much more normal than before. I realized how much I missed playing baseball. So I gave myself a year to train so I can walk on for my university's baseball team. In 2012, I walked on as a pitcher and made the team. At the beginning, it was a bit challenging but again, I made an adjustment, I made it happen. I lifted frequently in college but I was never too committed to it. I knew my limits.
After graduating from college I started to head to Boston for my Masters when I was faced with another health issue- acute kidney disease.( IGA Nephropathy ) That's a whole other long story that I will not be going into in this article. But long story short, after months of dialysis and a huge lifestyle change of losing my independence( forced to move home), unable to continue my education, limited traveling and my health deteriorating; I was blessed with a beautiful living donor. My kidney transplant was on June 20, 2017.
I have been given another chance at life, I will not waste it. I am now dedicated to taking extreme care of my fitness. My mind, body and spirit are in sync. I have fun in life, I eat and drink in moderation. I am engaged to a beautiful intelligent woman. I went on to earn two Master's degrees: International Marketing from Hult International Business School and Business Analytics from the University of Virginia. I have been focusing on my fitness lifestyle for years, I am doing CrossFit, weekly. Not to brag but I am fairly strong - I squat 315 lbs without a neck pad, I deadlift 400 lbs. I power clean 225lbs. I don't feel any pain as long as I do the right form and techniques.
Thank you again for giving me an opportunity to share a short story about my scoliosis and fusion.