Nora’s Story

Nora was born June 18, 2012. She is one of only approximately 135 children born with congenital scoliosis each year in the US.

She was just five months old when she was diagnosed with early onset congenital scoliosis. We noticed a curve in her spine that 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 seeing our primary care physician, she immediately sent us to urgent care to get an x-ray. We were soon told we needed to go to Children’s Hospital in Denver.

After meeting with a pediatric orthopedic surgeon who specialized in early onset scoliosis, we learned she had two hemi vertebras in a row in her thoracic region at T10 and T11 creating a curve of about 37 degrees at that time, which is pretty significant.

What ‘congenital’ means is she was born with abnormally shaped vertebra. Vertebra are supposed to be rectangular shaped, hers were more triangle, wedge shaped. We learned at that appointment that she would need surgery eventually but for the time being we would just monitor her through x-rays every three to four months.

Early Onset Scoliosis, of any kind, not just congenital, is very very different than the scoliosis most of us are familiar with. It seems everyone knows someone with mild scoliosis, or a teenager who wore a brace for a few months. This is very different and very complex because the scoliosis is affecting an infant with rapid growth ahead of them. If you have a progressing curve in the spine, that spine is going to continue to progress and get worse as the child grows. That in itself presents a multitude of other issues. Most importantly it will impact the growth and development of the chest wall cavity. Meaning, the lungs and heart won’t grow to their proper size. Once growth of these organs has been compromised, you can’t ‘get it back’. An added complexity to this is surgery is not always the best solution in a small growing child. When you perform any type of spinal fusion growth is stopped at the point of fusion. The spine will no longer grow in those areas. That will not only affect overall height but that can also impact the growth of the chest wall cavity and stunt the heart and lung development as well. Progressive congenital scoliosis that goes untreated can lead to early death.

Congenital scoliosis is rare, occurring in approximately one of every 30,000 births. Spinal deformities in these patients have different treatments and prognoses based on the severity of abnormalities of the bone or bones, the pattern of deformity and whether the abnormal bones become more deformed as the child grows. Every case is truly unique, which means there is limited research and studies regarding treatment of congenital scoliosis.

It’s not uncommon for children with congenital scoliosis to have other abnormalities, particularly with the spinal cord itself, the heart and/or kidneys. This is because when the spine is developing, in-utero, the heart and kidneys are also developing at this time. If something goes wrong with one, it’s not uncommon for something to go wrong in the others.

Nora was scheduled for a full spine and spinal cord MRI to get a better look at her entire spine and cord. She also had an echocardiogram and a kidney ultrasound at seven months old. Thankfully, she had no other abnormalities present.

By the 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.

We wanted to pursue any options we had that were less invasive than surgery at this point. Bracing very rarely works in congenital cases but metha/EDF casts can be successful. When I say cast, I mean a real cast made of plaster that is on a child’s torso, just under the arms and down to the hips, with an opening for the tummy and a small hole in the back.

The casting process is not at all like getting a cast for your broken arm. Mehta/EDF casts are applied in the OR under general anesthesia, with the child intubated. The child is placed on a special casting table then is put into traction to get the spine straight while the surgeon applies pressure to the spine and body to address the rotation of the spine that occurs in scoliosis. Then the cast is applied. Casting is very much an art as it is a science. There is a significant learning curve for surgeons to apply casts properly. Internal organs, especially the respiratory system need to be considered and monitored during this process too. If not applied properly, a cast can be dangerous. These casts are not removable like a brace. So that means we cannot get it wet, no baths, no swimming. We can’t play in sand or be in the summer heat long because casted kids can overheat easily. These casts are on for 8-10 weeks at a time and a new one is applied in the OR again with the same process. It is considered surgery.

Casting children with congenital scoliosis is somewhat new and many pediatric orthopedic surgeons simply don’t think it can work to hold a curve. We were willing to try and see as the alternative was to just sit back and watch it progress and force us into doing surgery sooner than anyone would want. Thankfully, since the time we started casting, new published research has come out showing casting can work in many congenital cases as a delay tactic for surgery.

We casted Nora for almost two years till she was big enough for the surgery she needed to fully address her abnormally shaped vertebra causing her curve. Her casts became a part of her, which was bittersweet.

During this time we sought second, third and forth opinions from experts in many parts of the country. We are so thankful we felt we had an excellent surgeon right here for us in Denver. Many kiddos with congenital scoliosis have to travel to see the right surgeon.

The decision on when to do surgery wasn’t easy nor was deciding on what kind of surgery to do. There were various opinions and options. Our surgeon said it best, when you have several options, it’s because there isn’t one perfect- slam dunk solution.
That was the hardest part in all of this, accepting the fact there was no perfect solution.

In the end, we had 14 different well known and well regarded surgeons all over the US and world consulting on Nora’s case and what surgery to do. There was no consensus. Ultimately, we decided with our surgeon what route to take. We took his lead on what he felt would provide us the best outcome with the least risks. We didn’t choose the most conservative and we didn’t choose the most invasive.
I’ve dedicated almost the last three years to researching and studying this as much as I can. I have two huge binders full of highlighted studies and papers. This was a blessing and a curse at the same time because it became an obsession in ways.

Nora underwent surgery August 25, 2015. She had what is called a modified short fusion. The results were better than expected, initial xrays show her spine looks great with more correction than we anticipated! Surgery was tough on all of us but she has handled recovery very well for a three year old. She’s already back to doing many of the normal things three year olds do, like running, jumping, dancing and playing!

Nora’s story isn’t over, she still has a lot of growth ahead of her and there’s no telling what her spine will do. We expect this will not be her last spine surgery but for now we take it day-to-day and are celebrating this surgical victory and seeing our little girl sing and dance.

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