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.
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23 comments:
Oh.my.gosh...what a sweetheart. My heart is breaking right now! And the thing that kills me about all of this is that even when many of us DO get our xrays done, the techs have no idea what they are even doing or looking for!
I read about this yesterday, so very sad. We will keep this sweet baby girl and her family in our prayers.
Well, for now I think Kennedy is fulfilling her purpose in life through you telling everyone her and your story. You have been such a great advocate for not only Kennedy, but all children with disabilities.
this just breaks my heart for this family. I had no idea it could be fatal (thank goodness I didnt read about his last week before W's xray) Thank you for making others aware of so many other "isues" that come along with DS
Oh my gosh, I've never even heard of this, thank you so much for making me aware. I'm calling my pediatricain first thing tomorrow to get x-rays.
Heartbreaking :(
What an absolutely Beautiful little angel. She and her family will be in my heart.
Oh how awful, I am so sorry. Prayers for their family. Thanks for making people aware.
WOW praying for this family..what a angel!
hugs,leslie
p.s i will pass this to my gf whos son as DS!
This breaks my heart.
How heartbreaking... :(
Thank you so much for posting this! So sad, but very important to know.
I'm so relieved for yo guys, and so sad for them! We'll be praying.
You are right that God has a very special plan for Kennedy. That little girl has gone through more in her few years than most people go through in a life time. Not sure what God's plan for her is but I know that he isn't done yet. The world can be changed by one person and Kennedy sure has done that. Thanks so much for fighting for her rights and for paving the way for others. You have so much support. Thanks for putting your family out there so that one more child can be saved.
We are bringing home a precious angel from Ukraine this year, and we will be sure to have him checked! Thank you so much for sharing this heartbreaking story that shows the importance of having the x-ray done. My prayers go out to the family...
Tami
Hope you don't mind, but I'm sharing Kennedy's story about the surgery to help other moms know that there IS something that can be done to prevent this.
That is so terrible! :( Didn't even get a chance to turn two! :(
Thanks for all of your kind comments on my blog, Renee! I hope you can bring Kellsey home soon!
My heart broke when I read this. What a sweetheart!
Thanks for sharing her story, Renee.
Thanks for sharing her story, Renee.
Oh my gosh, so sad! What a precious little face!
My Heart goes out to Rhiannon's family. I cannot imagine what they are going through but sending prayers and well wishes their way.
A few years ago we faced Sam needing to get his spine fused also. Although he does not have AAI or AOI he had a problem that stumped the docs.... Sam's initial C-spine revealed that he did not have an ondontiod process so without having an OP Sam can never have problems with AAI but they were worried that CI could slip over and down C2 and get stuck... sort of like a internal decapitation. Scary! Apparently this is one more "uniquely Sam" issue that we just need to keep an eye on.
Kennedy is an inspiration and so very brave. Thanx for sharing this... maybe it will encourage more strict screening timelines in hopes of catching it a bit earlier.
Rhiannon my prayers are with you littel angel as you walk with God our farther in heaven my prayers also to your family LORD I ASK YOU TO SHOW YOUR GRACE AT THIS TIME ASE YOU PROMISED US AS WEE KEEP OUR FAITH IN YOUAS YOU COMFORT THIS FAMILY THANKYOU JESUS
I also have a child with DS he was 3 years old when he had his xrays they told us his xsays was normal that he didnot have AAI 3 years later he was dieing from AAI his xrays from 3 years earlier was not normal but abnormal it showed he had spinal cord compression but now 3 years later his C1 has broke into multiple pieces and has a spinalcord injury over 60% of his spinalcord was compromised he has had 3 surgeries in 4 years of this cause it was so bad his gap was about 14 mm also but he is doing well and can walk but with some struggles he has 3 rods 6 screwes 2 hooks in his neckhe has had a halo twice with 8 pines screwed into his skull for 5months
not pritty so i ask when the time comes try get a MRI OR A CT SCAN cause if you sit just right at the time of xray your childs spine might be in its normal position and after the xray it can slip out of its normal position and the xray will miss it and you will never no untill its to late but MRI CT SCAN WILL ALLWAYS SHOW IT .I wish you all well and God Bless all of you
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