My 2 month old son passed away a year and half ago. His death was ruled SIDS but on the autopsy it says that evidence was found of a Chiari malformation. Doesn't say what type or give the measurements of the herniation. I have it as well (8mm) and I'm really interested if my 4 year old has it too. I know my daughter doesn't because she just a MRI.
Anyway, I am now wondering if his death wasn't Chiari related. I know I'll never know for sure, but I find t interesting that they noted it on the autopsy yet still ranked his death as SIDS. I have devoted the last year and a half to SIDS research and can tell you anything you want to know about it but am new to the Chiari world.
I'm so sorry for your lost. I feel for you. I lost my first child at 4 month pregnancy and I almost lost my now 9 years old daughter when she was 2 months old. Was happend is that I when to get her in her crib to show her to people coming to visit. When I reach for her she was barely breathing and very lump. My husband is diabettic so we check our new born blood sugar and it was extremly low. So we called 911, and at the hospital they told us that we where the most lucky parents in the world. I now never sleep a full night without going to check on her!
The lost of a child is the worst thing that can happend to a parent. Again I'm so sorry for your lost.
I've wondered about the sleep apnea aspect. Sleep apnea deaths and SIDS deaths are reported separately. With most doctors and neurologists not having a big understanding of Chiari, though, I wonder if they would have even looked at the malformation and thought that it might have caused something to go haywire. I don't know, by the way, how they can rule out sleep apnea in an autopsy. I know they can tell it by obstructive sleep apnea (like if they tonsils were too large) but I don't know about anything else. Unfortunately, SIDS is a cause of death by exclusion which is supposed to mean that everything else was ruled out and they just don't know. With such a limited amount of knowledge of Chiari, though, I am now somewhat suspicious of the COD.
Thanks for the thoughts, by the way. It has definitely made me more on top of things as far as medical care goes. I used to be a lot more passive and now I am more assertive, espeically where my kids are concerned.
Glad I was able to give u some ideas or thoughts...and hope it can help with ur research and ur other children as I can tell u will not let neone tell u what is what...always go with ur mom's radar, insights what ever u call it....that is y we have it....and u will continue to do well.
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