The Power of Faith: Katie VanderKooi's Journey with Juvenile Scoliosis

A Huge thank you to Katie for sharing her story!  We met Katie and her amazing parents in pre-op holding the day of Katie's fusion/rod surgery.  It was also the day of William's first casting.   Quiet conversations in the waiting area led to a unique friendship that has lasted nearly 3 years.  When we were leaving the hospital for William's second cast, Katie and her family were leaving her first post-operative appointment. God once again put us in the right place at the right time.  We exchanged email address' at this moment and have shared updates since.  What the Lucky Cast Club has sought to do for families of Infantile Scoliosis, Katie has provided for teens facing surgery.  We are blessed to say we know this talented and beautiful young advocate! 

My name is Katie VanderKooi, and I’m a 20 year-old senior in college. I was diagnosed with idiopathic scoliosis when I was 6, after telling my parents that my back hurt. It was mild (with one 18 degree curve), so the doctor told us to keep an eye on it, but nothing needed to be done. Then in 5th grade, x-rays showed that I had two curves of 23 and 30 degrees.

My doctor told us that I would need to wear a Boston back brace for 23 hours a day. The first week was difficult, especially the first few days. It felt hard to breathe and move. But soon, my brace became a normal part of life for me, and I didn’t notice it. In 8th grade, I began experiencing severe pain in my hip shooting down my right leg, mostly in the middle of the nights. My thigh started going numb, and we found out that my brace had been pinching a nerve in my hip. My doctor adjusted my brace by putting a hump on each hip area, and eventually the pain and numbness went away.

As the years went on, my curves gradually progressed, but surgery never crossed my mind. Finally, in 10th grade, I was told that surgery was most likely going to be necessary for me. The news hit us pretty hard at first, because we never expected we would hear it. But I kept wearing the brace until 11th grade, and my life went on as usual. During my last 2 years of high school, it became hard to breathe when playing sports, and I had back pain on a daily basis. So during my senior year of high school, I had my spinal fusion on November 17, 2009 (after volleyball season), with 52 and 57 degree curves. I was really nervous about my surgery, but God gave me peace that only He can give. I had the support of my family and so many friends at my church and school.
My surgery took place at Shriners Children’s Hospital in Chicago, and my surgeon was Dr. Kim Hammerberg. I couldn’t have been happier with his work and the hospital’s care. I now have two 18-inch titanium rods in my back with 18 screws. Now the curves in my back are only 22 and 20 degrees! I can’t bend my back anymore, but that still leaves me with so much to be thankful for!

So after about a week in the hospital, we traveled 3 hours home. As the piano accompanist for our high school choir, I made a goal to be back to school to accompany for our Christmas concert, since that’s what I loved to do. It was hard, but one of the most rewarding times of my life! I started going back to school for about 2 hours a day after 2 weeks. Soon I was going from half days to full days.

Since then, I’ve had many great opportunities. I’m back to playing volleyball. I wasn’t expecting to be able to play volleyball competitively anymore, but I was chosen to be on the 2nd All-Star team at college almost a year later. Through my blog and YouTube video, I’ve come into contact with many other teens with scoliosis and mothers of kids with it. A group of college students and I were able to provide Christmas music to the Shriners Children’s Hospital in Greenville, SC. And this summer I will be putting on a fundraising concert for the Ronald McDonald House (where my parents stayed during my week at the hospital), and hopefully a fundraising volleyball tournament for Shriners Children’s Hospital.

I’m so glad I had my spinal fusion, because of how it has helped me physically, what it has taught me, and the amazing opportunities I’ve had because of it.

The talented pianist in this piece was none other than Katie Vanderkooi!   

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