Thursday, January 03, 2008

Primordal Dwarfism

Brent and I saw this really interesting program on the discovery channel last night. I was hoping someone else happened to see it too. It was about these kids that have primordal dwarfism. The particular girl they were following was a 13 yr old that just had a rod placed in her spine (or something very similar) to correct the curvature and improve her breathing. I wonder if Ammon's surgery will be similar. This girl, Taylor, was almost 14 and weighed 17 lbs! It's facinating to watch this tiny individual act like a teenager -- arguing with her family, going to a school dance, wanting to hang out at the local swimming pool, etc. She has a chipmunk like voice, too. You feel bad that there are still stupid people out there that point and laugh.
We actually have a little girl in our ward who shares a lot of the same attributes of these kids on the show last night. She seems to behave like other toddlers, but is really tiny and her face shape is a lot like those kids with this disease. I think the odds of parents having a child with this disease is something like 1-1,000,000. Just wondering if any of you had seen this program. I'd not heard of this disease before last night.

2 comments:

Papa Doc and the Duke said...

No, I didn't see the program but have seen other programs that have shown the same syndrome.
Ammon's surgery won't correct all the curvature (sp?) because not only does his spine curve sideways, but it has begun to rotate to the right. That is why he has such a huge bump behind his shoulder blade -- it is really his rib cage and they can't correct that. Ammon will be about 4-6" taller after the surgery (we hope) but his trunk will no longer grow in height. His legs will continue to grow as will his arms. His chest and trunk will expand, but won't get taller. That is one reason the doctors like to wait as long as they can to get the maximum height. Ammon will actually have two surgeries within a week. Neurosurgeons will first untether his spinal chord, which means it is stuck to scar tissue. They have to do that so his spinal chord can be stretched as far as possible. Barring unforseen complications, one week later (while he is still in the hospital), the orthopedic surgeons will insert the rods along his entire spine. It will be a long and difficult surgery -- it always is with any kind of rod insertion. I feel badly for any of the kids and family that have to have this kind of procedure but it does, generally, improve their lives.
Mom

Lance&Nance said...

I totally saw that show about dwarfs too! I even asked Lance if that was going to be the same kind of surgery Ammon would be having. Weird.