Our daughter, Charlee, was a healthy, happy baby. She met all her milestones and was very smart for her age. Everyone who has ever met Charlee loves her funny, happy and loving personality. We never noticed anything out of the ordinary when it came to her back. When Charlee was 11 months old she got sick (on a weekend, of course, so her pediatrician wasn’t open) so we took her in to an Urgent Care. She had caught RSV, a common illness amongst babies. The doctor suggested we do a chest x-ray to rule out the possibility of pneumonia. While the X-ray taken at the time did not show any sign of pneumonia, it did, however, show a significant curvature in her spine. We had no idea she had a curve until that point. Then we started to notice a shoulder droop, small rib hump and the curve itself. Our family still says that RSV and pneumonia save our daughters life.It is crazy the way things work out in life.
We scheduled an appointment with her doctor the next day, whom got us in contact with a pediatric specialist for Idiopathic Infantile Scoliosis. She was placed her first cast and had an MRI to rule out any cord tethering in May of 2012. At this point, her curve was 38 degrees. I left the first casting feeling very discouraged and unsure. I specifically remember being extremely emotional. I felt like was completely alone in this journey. I felt like we were not getting the answers we deserved to have as parents.
During the duration of her first cast we did a lot of research about Idiopathic Infantile Scoliosis. I came into contact with the ISOP, which was the best thing I could have done. There was so much wonderful information on the site. I felt like I was on a common ground with the other members, but mostly I felt supported and understood. None of my friends with children could relate to this situation, so it was refreshing to talk with other members that can help listen and support each other. A few other members of the group shared their wonderful stories about their experiences with Shriners Hospital for Children in Salt Lake City. Another member of the group even helped me get in contact with Shriners Hospital, so when our acceptance letter came in the mail I was more than elated!
During our first visit at Shriners Hospital they did laying and standing x-ray. This showed that she had a 38 degree curve, indicating that the first cast had produced no improvement. Disappointment began to set in for us, however we looked on the bright side and placed all our trust into DrD’Astous and his medical team. Our trust was completely valid, as they were able to correct her spine to 22 degrees with the second cast (first cast placed by DrD’Astous). The emotions of such great news were overwhelming. Each cast that was placed at Shriners improved her spine a great deal.
Charlee was seen at Shriners for the duration of 5 casts, or a full year of casting. Each cast was placed for about 2 months before it was replaced. Each casting brought a large array of emotions to our family. Adjusting to casting was a very difficult thing to do for our family. I felt very sad for us at first. I remember crying, a lot. I missed touching my baby’s back. We missed the pool, the bathtub, sprinklers in the summer and snow play in the winter, but it was completely worth it! We developed a family routine that worked for us during bath time that consisted of a lot of plastic wrap and the kitchen sink. I found great strength in the stories of other parents whom have experienced Infantile Scoliosis. Their success gave me the courage I needed during the hard times. Without ISOP, who knows where we would have been!
Charlee has been in 2 braces that she wore for 20-23 hours of the day, and one night time brace after casting was completed. Her spine was about 12 degrees when she was placed in her first brace. We were very strict about her wearing her brace at all times, unless she was taking a bath or swimming. She ended up gaining correction in her braces and I am elated to say that Charlee’s spine is currently at zero degrees!!!!! No kidding!!! Our family is nothing short of blessed to have found such a wonderful, gentle way to straighten her spine. We are so thankful! Please feel free to ask questions! Thanks for supporting ISOP!
