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Chiari Malformation Community
5.21k Members
1216917 tn?1266514399

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?1452915648
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?1226521677
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?1278681846
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?1297478990
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?1286517257
Thank you for reaching out to others - my heart goes out to you.
Avatar universal
I am so very sorry for your unfathomable loss! I, like Carolyn, also have three sons of my own and can not begin to imagine your heartbreak. God bless you for working to spread the word to the people who can make a difference. Your post has been on my mind all day, and I only just now found the words to write you. If there is anything you need, call on us, please!

Praying for you,

Rosemarie
620923 tn?1452915648
COMMUNITY LEADER
Bump
1309085 tn?1273746282
Dawn,
Your strength in such a hard time is inspiring. My son is 7 and was recently diagnosed with Chiari. So many doctors are so quick to dismiss Chiari as something not to worry about. When my son was diagnosed his family doctor said "it's no big thing and I wouldn't worry about it if my child had it". Then we saw the ped neurologist who ordered an MRI to confirm the diagnosis(his Chiari was originally found on a ct scan). After that we were referred to a ped neurosurgeon who order CINE studies. But it wasn't until we saw the ped neurologist on follow up that a sleep study was ordered. The neurologist assumed the neurosurgeon would order it but when he didn't (and he was in shock that it wasn't even talked about with us) he ordered it asap. Bless you and your family for what you all have gone through and I pray that there isn't any other family who has to go through what you all have due to a doctor ignoring Chiari.
1017160 tn?1251503608
Im so sorry for your loss, my heart and prayers go out to you and your family.

Alicia
570413 tn?1299532661
Dear Dawn,

May the Lord comfort your heart and bring you joy once again.  I am so very sorry for the loss of your son.  It is just heartbreaking that something which *could* have been treated caused your son's death.

(((HUGS)))  

Thank you so much for sharing your vital message to help prevent another death!

Blessings,

Rebecca
Mom to six wonderful blessings from the Lord
Avatar universal
There have been cases also of sudden death from brainstem herniation causing cardiac arrest, once by a boy falling down flight of stairs. I had severe symptoms, seizure episodes and altering levels of consciousness, hydrocephalus and I remember them saying , " don't worry... U can't die from this!"... Granted it's rare, but nonetheless... I'm so so sorry. We need to do a lot to change the way medicine treats this so this doesn't have to happen!
Avatar universal
Dawn,
I am so sorry about your little boy it is just heart breaking.  I have a 7 year old that was born with craniosynostosis of his metopic suture that went undiagnosed and this last year we learned he has a a chiari but it has not been taken seriously as none of this has his whole life.  It was suggested by a out of state doctor through email that he have a sleep study but his doctors blew it off.  I will be scheduling that sleep study ASAP!  
I just happened to turn the TV on the story tonight and it may have saved my son's life.
Your son has helped my son and others I have read here I am so sorry for loss I can't imagine what you have been through.  You are a very strong woman and mother to share your story to help others and you will forever be in my heart.  Thank you
1063386 tn?1287878569
I am so sorry to hear your story.   Words can not express    Love to your family for the strength to share his tragedy to help others
539750 tn?1226521677
It is amazing how ignorant doctors are when it comes to Sleep Apnea.  I saw my doctor for this, so I could get tested and went to a sleep class with was all about Obstructive Sleep Apnea, I am sure I have Central Sleep Apnea.  When I asked the educator about CSA she said she had never heard of it and didn't know there was more then one kind.  She told me my research must be more up to date then her's!!

I got approval in the mail yesterday to schedule the 2nd class which in the letter states is to "test for a common sleep disorder called obstructive sleep apnea".  I am just shocked.  Doctor's can't seem to get past testing for things that are common...

Your son's death is a tragedy that could have been avoided if some doctor's weren't so negligent.
Avatar universal
I am so, so sorry for the loss of your son.  I actually saw the very end of that episode last night on Dr. G.  I wish I could have seen the whole thing.  I have for years occasionally woken myself up by not breathing.  I did it just the other night and it scared me because I gasped when I breathed in.  I was thinking that I may need to discuss that with my Dr. but thanks to your story I am def going to.  BTW, he was a beautiful boy and my heart breaks for you.
459325 tn?1274755074
I actually saw that episode last week and I was in shock after seeing it. I couldn't believe that the drs didn't even tell you he had it. I completely agree with you and I commend you for what you're doing because it is something that can't be ignored. I am deeply sorry for the loss of your sweet boy and I will praying for your family.

Sarah
1422823 tn?1287679280
I am soooo sorry for your loss!
Avatar universal
My baby brother passed away when he was 18 for "unknown cause of death" seven years later I was diagnosed with Chiari I and had decompression. They told my mom that in my brothers case sometimes the signal just doesn't make it from the brain in time and he just quit breathing; however, in my case it was affecting my heart and the signals were 20 minutes delayed.
Just saying all of this to thank you for your post and let you know how sorry I am for your loss. But I am glad you have the strength to try to make understanding of something that is so misunderstood.
Michelle
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari .

My deepest sympathies at the loss of ur brother.

And thanks you for also sharing a painful personal story with us, it helps give credence to the fact we all need to know just how Chiari  may affect us....and that not all drs are well informed to help us.

"selma"
Avatar universal
Hi
I am so sorry and can't even imagine what that would be like. I know someone else who's daughter died in her sleep from the same thing.  I am going to be contacting my daughter's doc tomorrow and see if she can have a sleep ap test done.  That is if they can take payments because she has just had her medicaid taken away because I got married and we make too much money.  Thanks for letting us all know
Avatar universal
I am very sorry to hear about your son. I too have been diagnosed with Chiari Malformation Type 1. I underwent the decompression surgery almost a year ago and I am just now being scheduled for sleep apnea testing. What you are describing has been a constant worry for me. (mainly because it isn't something I want my children to deal with). I think what you are doing (informing others) is wonderful. And again...I am very sorry for your loss.
Avatar universal
my deepest condolences . everything thing should be checked . I think even baby born should be checked and have a xray  . even more so if someone in the family has it.
1481186 tn?1287601769
I am so sorry to hear of your loss.  Thank you so much for sharing your story - it will probably save lives!

My son was diagnosed with Chiari 1 Malformation two days ago.  We are still numb and scared - he is only 3.  We meet with the neurosurgeon soon, and I am still coming up with my questions list - I will for sure be adding this to the list!!  Thank you!
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