I have decided to chronicle my girl's journey with scoliosis on this site as well. I have a CaringBridge page that I mainly use for that purpose, but I really hope someone who is beginning this journey will find this site, and it will be helpful to them. But most of all, I want it to show that there is hope.
A was diagnosed with congenital scoliosis in May, 2005. She was 20 months old. This is a pic of her very first x-ray.
Definitely not the look we would have like it to have.
So what is Congenital Scoliosis? Here are some FAQs about it found on a scoliosis website.
Q: What is the definition of congenital scoliosis?
A: Doctors would describe it as a condition due to congenitally anomalous vertebral development, but it's easier to say it is a curvature of the spine caused by birth defects in the spine itself.
Q: What sorts of birth defects cause congenital scoliosis?
A: The most common birth defect is called hemivertebra, which means half of one side of a vertebra forms while the other side doesn't. Another defect is called a unilateral bar, a condition where you will find three to four vertebrae "stuck"or fused together on one side. At present, no one knows what causes these defects.
Q: In the case of a hemivertebra, how does it create a curvature?
A: All growing bones have growth centers, but if you're born with half a bone on one side and the other side is missing, the side with the growth center will grow faster than the other, and you end up with a curvature.
Q: When are doctors most likely to see signs of congenital scoliosis in children?
A: We seldom see it at birth unless an x-ray has been taken for some other purpose, such as pneumonia, or unless the child is born crooked. I have seen a few children a week old who had 40º-50º curves, but that's fairly rare. More than likely, we'll see it show up later in life—for example, in a teenager who's going through the growth spurt.
Q; In the case of the teenager, how would you know the youngster had congenital scoliosis and not idiopathic scoliosis?
A: When you look at an x-ray and see abnormal bone, you know it's congenital. With idiopathic scoliosis, you won't see any abnormal bone. As your readers will recall, idiopathic means a disorder that has no known cause.
Q: How many individuals in the U.S. population are affected by congenital scoliosis?
A: Congenital scoliosis is not a common problem: approximately one person in every 10,000 is affected, and that number has remained fairly stable over the years.
Q: How far would a congenital curve have to progress for you to begin thinking about treating it?
A: There is no magic number of degrees—quite different from idiopathic. If it's progressing, it needs treatment!
Q: Would you tell us about the treatments that are available for those whose curves get to that point?
A: Treatment of congenital is quite different from treatment of idiopathic scoliosis. For example, with congenital, bracing seldom works; the bones themselves are crooked or deformed, and a brace on the outside simply can't affect a discrepancy on one side or the other of the vertebral column. The only treatment that works is surgery.
Q: What other problems might one find in conjunction with congenital scoliosis?
A: Congenital scoliosis patients tend to have other problems as well, such as kidney dysfunctions or urinary tract abnormalities. In fact, 25%-30% of patients have kidney-bladder problems as well. 40% of patients have other anomalies of spinal cord development. 10% have congenital heart problems.
Q: Is there pain associated with congenital scoliosis?
Q: Can physical therapy help reduce or stabilize a congenital curvature?
A: This has been tried, but no, it doesn't help at all.
A's curve is mainly from a couple of defects in her spine. She has a unilateral bar, which is basically 3 vertabrae that did not separate on one side, but did on the other. She also has two hemi-vertabrae, which are kinda like little triangle shaped pieces. My best description is that a portion of her spine looks like a puzzle.
The next few posts will show our early travels in seeking answers and how God led us every step of the way.
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