I was, and still am, a first time mom when I learned my five month old baby had this rare form of scoliosis. When we began this journey in 2012 there really wasn’t a lot of helpful information on the web that pertained to congenital scoliosis or even early onset scoliosis. I felt very alone. It took a long time to dig and find up-to-date or accurate information on the disease. It also took a long time to learn much of what was out there, even on reputable sites, was in fact not the most accurate or up-to-date.
Because of that, I decided, after being encouraged by many others, to start this blog. When I started, my goal was to share our experiences, stories and the information I was able to get my hands on with other families with a child with this diagnosis. Over time, the blog has grown and changed some, and surprisingly has received a great deal of positive feedback. More than I ever could have imagined. I’ve been able to connect with so many families and have been able to help answer questions, and more importantly help others find the right team of doctors and surgeons. Something I had no idea would be so vital and there would be such a need for. We were lucky, in that, we were immediately directed to the right type of surgeon offering the right care and treatment. I really had no idea how often that doesn’t happen.
Slowly I began to find support groups that were really just starting to take root on social media sites. In beginning, being part of some of the groups had a very ‘start-up’ feel. It was hard for me to find information that pertained to my child’s case. After some time, my surgeon gave me a vital piece of information about how to actually classify my daughter’s diagnosis. Yes she had congenital scoliosis but she also fell under the category of ‘early onset scoliosis’. There are some complexities and technicalities around that but ultimately because her scoliosis presented in a progressive way at such an early way, she fit into both categories. This new term opened the door for me to new information and eventually support from other parents.
Soon I began researching as much information as I could from published research papers and I began listening and hearing from as many parents as I could. I soon learned what parents had been fully emerged in congenital and early onset scoliosis world.
Since 2012, I have dedicated much of my time to learning, researching, asking my surgeon numerous questions, I’ve joined support groups for so many different things that fall under the ‘early onset scoliosis’ umbrella. I began working some with the Infantile Scoliosis Outreach Program (ISOP) and it’s founder. We have seen several surgeons for opinions since our diagnosis and I have asked many questions of them all. I’ve learned a great deal on everything from the VEPTR, the MAGEC rods, TIS, neuromuscular scoliosis, VACTREL, and many of the complexities of congenital scoliosis, many of the surgery options and more from research and parents who have been down these roads much longer than I have.
I’ve created lists of information gathered on surgeons and hospitals and mush more across the US and beyond. I know who many of the great surgeons are, who specializes in what, and I know the surgeon who might be great in one area isn’t necessarily the best in other areas. With that, I also know many surgeons who probably should not be taking on EOS or CS cases and that knowledge is key to new parents facing this. I honestly believe I, and other heavily involved parents in these groups, probably know more about a greater deal of orthopedic surgeons than many orthopedic surgeons know about their peers.
My goal with this blog is to help other parents gain knowledge and understanding of many things…things they didn’t even know they needed to know. All the things I had to learn the hard way, I’d like to see be made easier for others going forward. My passion and a big part of my purpose in life now is to make a difference in this disease. What that exactly looks like and what it will mean over time, I don’t know. I’m still figuring that out but for now I will continue to do what I do here, in support groups and through organizations like ISOP, the Children’s Spine Foundation and our hospital, Children’s of Colorado.