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At just 5 months, our little Nora was diagnosed with congenital scoliosis. We had noticed a curve in her spine, which was hard to see for most, but not for a parent. It wasn't long before we learned everything there is to know about this spinal condition.
Congenital scoliosis, a category in itself rather than a subset of early onset scoliosis, is a tricky affliction. It's also rare, occurring in approximately one out of every 30,000 births. Spinal curves in these patients have different treatments and outlooks based on the severity of the curve, the pattern and the potential for the bones to shift as the child grows. Research and studies regarding treatment are limited and there are many different opinions on the best approach.
After meeting with Dr. Sumeet Garg, a pediatric orthopedic surgeon who specializes in scoliosis, we learned that Nora had two hemivertebrae in a row (malformed wedge-shaped discs) in the thoracic (upper) region of her back, creating a curve of about 37 degrees at that time. At that appointment, Dr. Garg informed us that Nora would need surgery eventually, but for the time being we would monitor her by doing X-rays every three to four months.
Nora was also scheduled for a slew of other tests: full spine and spinal cord MRI, an echocardiogram and a kidney ultrasound. These bones and organs, the spinal cord, heart and kidneys, all develop at the same time in utero, so it's not uncommon for children with congenital scoliosis to have other health concerns.
Thankfully, Nora had no other complications.
At age 1, a cast became our best option
By the time Nora was 1, her curve had progressed to 58 degrees. It was time to sit down with Dr. Garg again.
We wanted to pursue any options that were less invasive than surgery. It was our understanding that putting a brace on a child very rarely works in congenital cases, but mehta/EDF casts can be successful.
It's important to note that the goals of casting are very different with congenital scoliosis than with idiopathic scoliosis. With the latter, the goal is curve correction. With congenital scoliosis, casting is used to buy valuable growth time. We just wanted to slow the natural curve progression until Nora was old enough for surgery.
Casting is also still a relatively new treatment for children with congenital scoliosis and many physicians are skeptical, but we were willing to try anything.
Fortunately, Dr. Garg was very hopeful that casting would work for Nora. We began the process when she was 14 months old.
Casting worked for us!
Since we began casting, Nora's curve held pretty steady and only worsened a degree or two. She remained in the cast for almost two years until she was big enough for the surgery that we knew she would needed.
Casting can appear scary and shocking, but a properly applied cast doesn't stop or slow down these children. Children still hit their milestones; they just adjust and are more resilient than adults. They run, climb, dance, jump and more, just like other kids. The only thing they can't do is get wet, play in sand, or stay out for very long in the heat.
We are incredibly grateful we had a surgeon who was willing to take this approach and see if it would work.
At age 3, the inevitable surgery
Nora had spine surgery in the summer of 2015. The results were better than we expected and initial X-rays showed her spine looking great. Since, she has handled recovery very well for a 3-year-old. She's already back to doing many of the normal things toddlers do, like running, jumping, dancing and playing.
To learn more about Nora's journey, visit our blog. We have more details on our decisions, as well as research and in-depth resources on congenital scoliosis.