The medical examiner is right. And it's actually something I just learned myself. It is my understanding that when a baby passes away from SIDS, once they stop breathing they are already gone (they are already brain dead). :(

Hopefully Brandy will chime in she is a wealth of knowledge when it comes to this stuff!. I dont know a whole lot because Nolan's COD was RSV, not SIDS so I havent done a whole lot of research on SIDS. I hope you can find some peace in knowing that you did everything that you possibly could! *HUGS*

Thanks for your reply.

It is really hard for me to believe that. My husband and I also are trying to figure out if we do anything different, for example, we didn't send Chloe to the day-care that day, then all those external factors will be different and the SIDS won't be triggered. My reading of the triple-factor model for SIDS seems indicate the external triggering factor is needed and necessary. the medical examiner gave an example: lots of people have genes for cancer, but not all of them will get cancer.

Although we never know before hand, but it seems to me that if external factors have been changed for Chloe, then the SIDS may not be triggered at all and we will still have Chloe. it is really sad if this is actually true, although we know we can not predict and we can not save her. but such feeling of there are possibilities that we can possibly save her will be with us forever.

I completely understand how you feel. Because Nolan passed away from RSV, something that is completely treatable, I struggle almost everyday with the "what ifs." But at the end of the day I know we did everything we possibly could. I took him to ER, we stayed in the hospital for almost 4 days... we listened to the Drs... he was showing signs of getting better. I will never understand why he passed away from it nor will I ever have the real full answer. Not one that will ever satisfy me anyway.

Here is a long list of comments regarding if using monitor can prevent SIDS or not.

http://www.medhelp.org/posts/Sudden-Infant-Death-Syndrome-SIDS/Baby-Monitor-to-Prevent-SIDS/show/395093

I glanced through it and I agree wholehearted with one post. Let me paraphrase: If no one in the world understand the actual cause of SIDS, it is hard to believe that it is determined that SIDS can not be prevented.

Anyway, I just want to get this out as this really bothers me - also I don't know if we should have another child if there is nothing we can do. I am willing to monitor baby every minute, if that will make any difference.

Unfortunately, at this point in time there is nothing that can be done to save a SIDS baby. There are a few parents here who's babies were able to be resusitated; however, the baby is already brain dead by that point. Many SIDS researches (Dr. Hanna Kinney, to name one) believe that SIDS originates in the brain. From the reading I have done, the brain is the first thing to shut down so by the time a parent would realize a baby has stopped breathing (either because they themselves have noticed or because an apnea monitor has alerted them to it) it is too late to save the baby.
I find this reasurring and extremely scary at the same time. Reasurring because I know there is nothing that could have been done for my son, even if he was found right away. Scary because I am now 37 weeks pregnant and know that when it comes to SIDS, my baby's life is completely out of my hands.
As far as the triple risk model and SIDS, my son died while at daycare too and I often wonder if he had been home that day, maybe he would still be here. He also had a slight cold. I wonder if he hadn't gotten the cold would he still be here. The truth is, we will never know. But we have to remember, millions of baby's go to daycare everyday and millions of babies get colds; however, they lived and our babies didn't. These are such simple everyday things that our babies did not survive, and I truely believe that if it had not been a cold or a trip to daycare, it would have been something else that woudl have eventually triggered SIDS in our babies.

Thanks.

My husband is a scientist by training (in physics, not in medical/biology fields) and he can not believe there is no way to figure out what actually happened.

Brandy, can you send me the papers you have read regarding this topic.

My husband briefly read Dr. kinney's latest presentation and it seems to him that the main theory is the lower than normal serotnonin level, which cause the brain "think" everything is fine while actually less and less oxygen was inhaled by the baby - the brain for normal baby will take some actions, such as crying or waking up, but SIDS baby just continue to sleep as if there is nothing wrong. if such understanding is correct, then it seems to us that as long as we can discover early (in terms of stopping breathing) and "wake" baby up, everything will be fine.

Yes, I don't really know if we don't send Chloe to day-care that day will forever change it, or just delay Chloe's SIDS death.

the one of the most agonizing things is that no one asked us what Chloe's last several days/weeks were. Seems all the medical examiner and polices were just trying to fill some kind of checklist and "bin" Chloe in the SIDS category and call it done. If they can collect enough statistics, maybe there are some patterns that parents can use to "predict" and hopefully prevent SIDS is triggered.

Everything that I have ever read about SIDS says that a SIDS baby has never been saved. It does seem hard to believe. I have heard, 3rd handed, about people finding their babies immediately and still unable to resusitate. It does seem odd and unbelievable how this can be.
I am not sure that I buy the whole triple risk theory. For myself, maybe many of us, I cannot think of what the trigger would have been for my Alia. She was on her back. Not overheated. So I don't know....

I am in so much shock..... my child dying of SIDS 1 month ago, and i've been too scared to do any research on it. I begin reading your posts, and am not completely scared. That it seems no matter what I am completely helpless to my child, and that SIDS is already ingrained in their system that it just takes time to come out.
Does anyone know if there is some genetic testing that can be done to see if there is a carrier? I don't even know if i'm asking the right question. If anyone can pass on more information about SIDS that they have learned that would be great.

Lumberchic,

To answer your question the powers that be who research this stuff say that SIDS is not genetic, nor is it hereditery. I am sceptical just because my Nick was the 2nd baby to die suddenly on my husband's side of the family. On the flip side of that coin, my husband and I have 5 children together and 4 of them are living, Nick is ur only angel. We have had 2 children since losing him.

i just wanted to add to this. Firstly; I have met more than one parent of a SIDS baby who was actually wide-awake, holding their child when it happened. They were actually able to see it happening, and still couldn't stop it. When we say that "by the time you would notice, it is too late" we don't mean to say that if you were standing over your baby you could have just woken them up, it means by the time the baby exhibits any indication that something is wrong, it is already too late. Even if a doctor was watching them 24/7 with a monitor they still wouldn't be able to stop it. essentially, by the time the baby's breathing has stopped, the damage is done (breathing is the last thing to stop working, not the first). I know it doesn't make any sense and is really hard to swallow (I am 4 months pregnant with my first child since rhea died, so I am battling this myself too) but it helped us to try to think of it like a brain aneurysm, its instant and unstoppable, but that doesn't mean we should give up!

hdavis, this is so scary to me and at the same time a relief. SIDS is really life teaching us a lesson that we can not control life and death.

It is so scary and hard to believe that in this day and age with all the advancements in medical science that they cannot figure SIDS out. Anna did not fit into any risk category at all. I was aware of SIDS and all the associated risks so adhered to the available advice. There were no external factors that triggered her SIDS, it just happened yet there are millions of babies in the world who fall into all the risk categories and live.

hdavis, it is scary. but I haven't seen a single SIDS case here which the baby passed away when awake. can you point me to some of those cases? I tried to search online at various SIDS forums, and I can not find any.

There are like 3-4 parents on here that come to mind....they are not online often though. One lady was nursing her son, he stopped nursing, she thought he was sleeping, but no he died. Another lady watched her baby's eyes roll through her head and pass out, the baby was brain dead by the time they got to the hospital, another family was putting their baby to bed when the baby went limp in her dad's arms and later died. I will not post names here but I can maybe talk to you on PM

I also remember hearing these babies stories on DS as well. As a matter of fact, "Gingerello" is one of the mothers. I briefly mentioned these scenarios to Dr. Krous during a conversation with him, he seemed intrigued. As a matter of fact I would encourage any parent on here that had their baby pass away from SIDS while awake to contact Dr. Kinney or Dr. Krous and at least offer up their story. They may be very interested in hearing about them.