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Nora’s Journey Early Onset Congenital Scoliosis

At just five and a half months old, tiny little Nora was diagnosed with congenital scoliosis.  We had noticed a curve in her spine; it was actually hard to see.  You would have only noticed it if you were looking for it or if you were a parent, because that’s what parents do.  After meeting with a pediatric orthopedic surgeon who specialized in scoliosis we learned she had two hemi vertebras in a row (malformed wedge shaped discs) in her thoracic region creating a curve of about 37 degrees at that time.  We learned at that appointment that she would need surgery eventually but for now we would just monitor her through x-rays every three to four months.

congenital drawing

It’s also not uncommon for children with congenital scoliosis to have other abnormalities, particularly with the spinal cord itself and heart and kidney abnormalities.  This is because when the spine is developing in a fetus that development happens at the same time as the heart and kidneys.  So Nora was scheduled for a full spine and spinal cord MRI, and echocardiogram and a kidney ultrasound at seven months old.  Thankfully she had no other abnormalities present.

005By time Nora was a year old her curve had progressed to 58 degrees and we were at a point where we had to sit down with her surgeon and figure out what to do next. Congenital Scoliosis is tricky.

Technically it is not a subset of early onset scoliosis subset but rather its own category.  This is because the age of onset is prenatal and not between 0 and 5 which is how typical Early Onset is described.  Congenital scoliosis is rare, occurring in only one of every 30,000 births.  Spinal deformities in these patients have different treatments and prognoses based on the severity of deformation of the bone or bones, the pattern of deformity and whether the abnormal bones become more deformed as the child grows.  There is limited research and studies regarding treatment of congenital scoliosis and therefore a lot of different opinions regarding treatment as well.

IMG_4422We wanted to pursue any options we had that were less invasive as surgery.  It was our understanding that bracing very rarely works in congenital cases but metha/EDF casts can be successful.  So when Nora was 14 months old we began the process of Mehta casting.  We didn’t know if it would work, but our surgeon was hopeful.  The goals of casting a child with congenital scoliosis are very different from those with idiopathic scoliosis. With idiopathic the goal is curve correction through a growth guided cast. In congenital scoliosis casting is used to buy valuable growth time before starting down the road of surgery.   We aren’t looking for correction to happen; we are just hoping to slow the curve progression down that naturally happens during growth.

Casting children with congenital scoliosis is controversial and many pediatric orthopedic surgeons simply do not cast. Because congenital scoliosis is complex casting might not even be an option depending on the deformity and where.  We were willing to try and see as the alternative was to just sit back and watch it progress and force into doing surgery sooner than anyone would want.

playing with scullyIn the course of a year, we have been through five casts and we are happy to say her curve has held pretty steady and only worsened a degree or two.  We are incredibly grateful we had a surgeon who was willing to take this approach and see if it would work.  Nora is over two years old now and will soon be getting her sixth cast. We know surgery and/or surgeries are in her future and that’s another complicated road ahead of us but for now we are just gonna keep on casting as long as we can.  It can work!

To learn more about congenital scoliosis or Nora’s journey, visit our blog at http://norasjourney-early-onset-congenital-scoliosis.com

801 South Yosemite Street   |   Denver, CO 80230   |   303.691.9339   |   info@abilityconnectioncolorado.org
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