By working every angle and connection I had, I was able to get an appointment with a top orthopedic surgeon in just a week from having her first x-ray, vs. the four weeks I was initially told.  So we made the trek to Children’s Hospital in Denver.  Our doctor seemed so young, about the same age as my husband and I. In everyday life, that’s not young exactly but in doctor world it seemed young. His resume was just what you’d want to see; Harvard medical school, multiple fellowships and residencies with the few top doctors and hospitals specializing spine deformities of children in the US.

At this appointment, he explained congenital scoliosis very specifically.  We learned her curve was at 38 degrees and she had two hemi vertebras at T-10 and T-11 in the thoracic section of the spine.   He assured us she wasn’t in any pain and her curve wouldn’t limit her gross motor skill development.

He told us we would need to do an MRI to get a complete picture of her total spine and spinal cord. We would also need an echocardiogram and ultrasound on her kidneys. Reason being, when spinal deformities are formed in utero, between 3-6 weeks of pregnancy, it’s the same time major heart and kidney development happens and that increases the chances of abnormalities being present in those organs too.

Because her condition is rare and the research and treatment for these kids is constantly evolving, we were asked to be a part of a national study through The Children’s Spine Foundation. Without any hesitation we said yes.  If there was anything we could do to help others, we would.

Beyond that we were told we would just monitor her spine every 3-4 month with an x-ray and to go home, be happy, stay healthy and live life and enjoy our baby!  So that’s exactly what we did…. But we also scheduled a second opinion with a surgeon at Chicago’s Children’s Hospital.