Keira was born on April 15, our “tax day” baby. She was our 2nd child, with her big sister being 5 ½ yrs older. When she was 9 months old we noticed a hump on her back on the right side. Her pediatrician assured us it was just a muscle mass related to crawling and everything was fine. We now know this was actually her rib cage bulging due to her spine rotating.
At 11 months Keira started to pull herself up to try and walk. It was then that I saw her spine was not straight. I immediately called her pediatrician. We saw him that afternoon; I can still see him looking in her chart trying to see how he could have missed this. You didn’t need an x-ray to see the curve, but we got one to ‘confirm’ – she was measuring around 30*s. At this point her pediatrician referred us to the pediatric orthopedic surgeon, the “best in the west”.
We saw the orthopedic surgeon, who confirmed her scoliosis, but assured us that she would grow out of it and regardless there were few options for a child this small. I can still hear him explaining that bracing does not work. He ordered a MRI to rule out any neurological issues, which came back normal. At this point she was given the diagnosis of Idiopathic Progressive Infantile Scoliosis, and we began the “watch and wait”. One year later Keira was now almost 2 yrs old and the curve had progressed to over 80* and her rotation was severe. At this point the orthopedic surgeon said that he didn’t know what to do and he didn’t want to perform surgery on a child so small. Not much help from the ‘best in the west’ surgeon.
So I turned to the Internet to figure out what to do for my daughter. Thankfully I found Dr. D’Astous at Shriners Salt Lake City, who was using a derotational casting method to treat scoliosis. At 25 months Keira received her 1st cast. Unfortunately Keira didn’t get casted early enough for her to be ‘cured’ – Dr. D’Astous said at a minimum the casting would buy her time before surgery and the goal was to try and give her a ‘normal’ bodyshape. Keira also saw a geneticist and it was determined that she has a connective tissue disorder (CTD), however, they haven’t been able to determine the exact type. The CTD is most likely the cause of her scoliosis, and may present other issues as she grows.
Keira has made remarkable progress, she is currently holding in the low 30s and her rotation is almost gone. It has been over 4 years now that Keira has been either in a cast or a brace. Keira gets a brace each summer to allow the skin time to heal, as well as time to strengthen her trunk muscles. This summer her doctor decided to try a night-time brace, this brace is correcting better than the cast, so the decision was made to brace Keira instead of going back into the cast. The prospect of surgery is still on the horizon, however, with each month that passes we see the surgery window closing.
Other than not being able to take a bath, the cast hasn’t changed Keira’s life – she is a typical 6 yr old – who just finished Kindergarten and loves gymnastics. I often tell people that they shouldn’t put their adult emotions onto Keira – she isn’t miserable, since she has been in the cast most of her life she knows nothing else. This has been an incredible journey and it won’t be over until Keira is finished growing. I have learned a great deal about my family, as well as my friends and myself. I am also grateful for Shriners Hospital, where the doctors & staff dare to think outside the box, as well as make decisions based on my child’s needs and not what an insurance company deems appropriate. That aspect alone has made this journey so much easier.Keira's story was written by her amazing Mom and my comic relief in life, Liz! They live in California, and have raked in the frequent flier miles traveling to Salt Lake City, Utah for treatment. Liz is a Scoliosis Mom x 2! There are many a dark tunnel I have laughed my way out of because of Liz.