Some background....
When Addison was 8-months old Mike (her Dad) noticed that her rib cage was not symmetrical. When she sat, she tilted to one side and we could see her ribcage on the right side was protruding. We quickly made an appointment to see the pediatrician.
As much as I love all of the nurses and staff in our pediatricians office, I do want to share that my phone call about this mysterious bump was met with a bit of disbelief. "Babies are still very floppy at this age" was the response to my concerns about my 8-month old not sitting up straight. I am a pretty bold person so I just pushed past the "you're kind of being a neurotic mom" tone and said "well I guess if it's nothing, a quick visit won't hurt anyone". Which she kindly agreed and we went right in. I encourage you to push and advocate for your children if ever met with doubt. There is a lot to be said for parental instinct. And in the case of infantile scoliosis, early detection is the best chance for a non-surgical cure.
Our pediatrician felt and saw the same thing we did and sent us that day for X-rays. The images confirmed, Addison had a significant to severe right turning 'C' curve in her thoracic spine. Scoliosis usually appears in adolescents and rarely in infants. The realization that my child has a rare spine disorder known as Early Onset Infantile Scoliosis was devastating. I had so many questions and no patience to wait for answers.
This is where living in/near Boston is truly incredible. We had an appointment with an orthopedic surgeon who specializes in infantile scoliosis within the week. Many families have to travel across several states to a hospital that know how to treat infants with scoliosis. We felt lucky to be so close to Boston Children's Hospital. Our first x-ray at Children's revealed that the curve was less than initially recorded. While still significant, it was not severe and met the "watch and wait" category of curves. Addison's curve was 20-degrees. In some instances these smaller curves will self correct. Over the next year we met with the Dr. every other month and took new images, each time revealing no movement. Unfortunately on May 15, 2014 the x-ray revealed that Addison's curve had progressed to 33-degrees and her rib cage was beginning to twist to accommodate the bending spine. It is time to intervene.
The recommended course of action is a series of plaster casts over a 1-year period. Due to her age, the cast will be changed every 2 months under anesthesia to accommodate her quickly growing body. While the cast is on we cannot get it wet, so that means no baths, no pools, beach, etc. It also means we have to watch carefully what falls down the cast so nothing gets stuck and causes a skin irritation. This means, no sand boxes or playgrounds with mulch. Addison is almost 2 and has an almost 3 year old brother. My head is spinning about how my daughter will live happily in this cast, and if she will fight scoliosis for the rest of her life. The only certainty is that we will be a strong family for her and I know she is getting the best care in the world.
Follow us as we go through this journey with Addison.
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