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Chiari Malformation Community
5.19k Members
1216917 tn?1266517999

Chiari Related Death

This isn't a question as much as informational....

My son passed away at the age of 8 on March 29, 2008.  His cause of death is listed as "complications due to Chiari Malformation Type 1".  Due to sleep apnea that was caused by the Chiari, my son simply, slowly stopped breathing and passed in his sleep.  Dr. G:  Medical Examiner presented his case on the episode that aired on January 18, 2010 titled "Bruised and Battered."  I am presently on a mission to contact every pediatric neurologist in the state of Florida.  My request is that when a child is diagnosed with Chiari 1, they should then be tested for sleep apnea so they can be treated if it is found.  The few cases I find documented of sudden death in children from Chiari 1 are from sleep apnea.  These deaths are very rare, but they do happen.  Just because they are very rare, should the medical community ignore steps to avoid them completely if possible?

Dawn
(Mom to Angel Garion)

42 Responses
620923 tn?1452919248
COMMUNITY LEADER
My deepest condolences and I applaud ur efforts to do something to help with awareness in this area.

I pray u r successful in ur efforts and offer any help I can to your cause.
"selma"
539750 tn?1226525277
I have always had mild sleep apnea.  The night of my PFD surgery I stoped breathing, my husband who was in the room sleeping panicked, when the machines went off.   He got the nurse and woke me.  I calmly told him I have sleep apnea which he wasn't really aware of.  

I am sorry for the loss of your son, this is heart breaking.  I am glad you're brining awarness to the dangers of sleep apnea.  Even as someone who has it, I have never given much thought to the dangers and will change my thinking going forward,

My thoughts are with you.
1041839 tn?1278685446
Dawn, I am SO SO SORRY for your loss! I cant even begin to imagine your pain but i certainly applaud your efforts to raise awareness! Good job dear! If there is ever anything we can do just let us know! (((HUGS))) Shannon
Avatar universal
Dawn, So sorry to hear about your son.  I really was not aware this could happen. I knew about the sleep apnea but not that you could stop breathing enough to never wake up.  God bless you for getting the word out.  Also, your angel Garion. xo
Thank you.
Kim
1179332 tn?1297482590
Dawn....my heart is breaking for you...I have 3 sons of my own and I couldn't even imagine what you are going through.

You are so right this issue should never be ignored and it is so great that you are taking a stand. I applaud your strength and determination!! Like the rest..if there is anything I can do to help, please ask!

Carolyn
1159737 tn?1286520857
Thank you for reaching out to others - my heart goes out to you.
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