About 10% of kids with Down syndrome are diagnosed with AAI. This is a separation between the C1 and C2 vertebrae in the neck. Around age 3 every child with Down syndrome in the U.S. undergoes C-spine x-rays to check for AAI.
Kennedy went for her x-rays at just over 3 1/2 years old. She was found to have AAI and the even more rare and more severe AOI. AOI is a separation between the skull and the C1 vertebrae. Where a typical person has a 1mm gap there, Kennedy's was 13mm. We were told that a car accident or even falling just the right way and injuring her neck could cause her to be paralyzed... or worse.
In July, Kennedy underwent spine fusion surgery to repair her AOI and AAI. I have to admit that even though they told me what could happen if it went untreated, I wondered. I saw it as a threat, but after battling cancer I just didn't see it as THAT big a threat. Of course we wanted it fixed, but I really questioned whether or not it was all being blown out of proportion. I had never heard of anyone dying from AAI. Cancer on the other hand, kills more and more kids every day. But dying from AAI?
On March 5th, just 17 days shy of her second birthday, Rhiannon Elizabeth Nisly, who had Down syndrome, passed away from what appeared to be a sudden illness. Yesterday, I read that the autopsy showed that it was not an illness after all, Rhiannon had AAI and she died from a spinal cord injury pertaining to that. Her parents had no clue. She was over a year away from the point where they would even have her checked for AAI. And it killed her. Just like that.
March 22, 2007 - March 5, 2009
Since reading about her, my mind and heart have been consumed with sadness for Rhiannon's family and with "what ifs" for Kennedy. Every surgery that Kennedy had put her life at a huge risk. One wrong slip while intubating her and they could have snapped her spinal cord. One fall. One car accident. One wrong jerk of the neck. Wow. It's that serious. I get it.
For all of you out there that have little ones with Down syndrome, please please please please make sure your pediatrician orders c-spine x-rays for your child. They say the results are not accurate before age 3, but don't let too much time pass. AAI, like Leukemia, is one of the "ghosts of Down syndrome" - parents worry about it when it's hardly ever there... but sometimes those ghosts are real, and they need to be caught before it's too late.
It amazes me more and more every day how far Kennedy has come, and I just can't help but wonder what God has in store for her life... what her purpose is. I know she is going to do something so great, so wonderful. The Lord definitely has a reason for her to be here. And I'm so, so thankful.
Please keep the Nisly family in your prayers. I can't imagine what a devastating shock this has all been for them.