Infant death Chiari related?

[bledpub]

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.

[TraceyannB]

Hi Selma,

Thank you for taking the trouble to reply, and also for letting me know the rules about posting email, as I wasn't aware.  

I will private message, as you suggest, but if anyone else does read, please do let me have your thoughts.

Kindest regards,

Tracey

[selmaS]

  Hi..and welcome to the Chiari forum,

It can be a difficult answer to come by...if SIDS could be Chiari related or sleep apnea.....

The member u addressed this to has not posted in a yr, so u may want to send her a PM (private message) plus u can not post ur email in the public forum.

[TraceyannB]

Hi there,

Firstly, I am terribly sorry to hear of your loss.  It never goes away, you never forget (why would anyone want to?) , but eventually you begin to feel happiness again, then the moments join up and then you realise you have survived.  There will always be wobbly moments, but there will be good times too. It is life..

With regard to cot death and Chiari, I too really want answers, my cot death baby, 17.12.87 - 25.01.88, Graeme David, has two brothers he never met, Andrew's girlfriend is due to have their first baby on May 31st 2014.  Since my cot death I have found two worrying factors.  Firstly my birth father had an infant boy who died of SID's at a month old.  My birth sister from my mother's side has severe Scoliosis,caused by Arnold Chiari.  I too have Chiari I.  A lot of things I knew nothing off when my little baby died.  All made complicated by the fact that I was adopted at4 months old.  

Apart from the fact there should be a book in it, I want to be able to help my son and his partner, as they embark on this frightening, exciting, wonderful journey called parenthood! If you would like to contact me I am ***@****.  Kindest regards, Tracey xx

[selmaS]

  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.

  <3

[bledpub]

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.

[selmaS]

  Hi...I did read about the connection of SIDS and chiari....and if I remember correctly it is the sleep apnea that plays a role in the death....

One Chiari Dr stated that one in 100 r dx'd with chiari....that makes me wonder about those that r undx'd......

My deepest sympathies for ur loss, I can not imagine what it is like to lose a child.

     "selma"

[drewlevas]

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.