And this is what her spine looks like today... from the inside. She has lots of wires, titanium plates and cadaver bone in there. (That's a lovely thought, right?)
Today she is doing great! She goes back to Philly once a year and still has a few restrictions on what she can do, but she's here, she's alive and she's no longer in danger of a "catastrophic event". She was lucky, because her AOI was discovered and fixed before anything bad could happen. If you would like to read more about Kennedy's surgery, you can find the whole ordeal (in backwards chronological order) right here .
Other kids have not been so lucky...
If you have a child with Down syndrome, you may be asking yourself, "What is she trying to do, scare us?" Yes. I'm trying to terrify you! For the sake of your children. It ticks me off that the AAP has so carelessly made this recommendation and that SO many pediatricians refuse to take AAI and AOI seriously. I have heard parents time and time again say that their pediatrician refuses to even write the order for the x-ray because it's not necessary. Really?! It's an x-ray. It takes five minutes. You need to demand that your child have this x-ray done around age 3... you need to emphasize that they write on the order to do "flexion and extension views" because many x-ray labs do these x-rays incorrectly.
Before your child gets on a trampoline, before they get on a horse, before they climb into a bounce house, before they join that gymnastics or tumbling team, before they have ANY surgery requiring intubation, please get that x-ray done. This is SO important, and as parents of kids with Down syndrome, we need to stand up against the AAP and their "guidelines" because they're putting our children's lives in their hands. By the time our kids show symptoms, it's too late. If your pediatrician disagrees, then it might be time to find a new one.
If you have any concerns that your child may have AAI or AOI or if your child's x-ray comes back positive for one of these, you can always get a second opinion and talk to the country's leaders in spine fusion surgery at Shriner's Hospital in Philadelphia . They are on the cutting edge of AAI/AOI research and technology and will soon be opening a clinic dedicated solely to this condition. Shiner's Hospital provides medical care to all children free of charge and travel arrangements can be covered as well. Please take this seriously. Please don't let your child's ped brush you off. This "ghost of Down syndrome" is alive and very real and it can affect your child. I'd love to see this message spread throughout the Down syndrome community, and I'd love to see my friends who are pediatricians pass it along as well. If you're a ped reading this, please please please kindly ignore those AAP guidelines and order that x-ray! It's 5 minutes that can save a life.
*You can contact Dr. Amer Samdani at Shriner's Hospital for Children in Philadelphia at 3551 North Broad Street, Philadelphia, PA 19140 (215) 430-4000.