Sudden Infant Death Syndrome (SIDS) Support Group
Sudden infant death syndrome (SIDS) is any sudden and unexplained death of an apparently healthy infant aged one month to one year. SIDS is responsible for roughly 50 deaths per 100,000 births in the US.
My son was 4 months old when he had near sids, he is now 2 years old. Its hard to think that the years with him have gone by fast. I try to live every day as if its my last with him, all the bad story's i hear about how peoples kids survive sids and everything goes right and they wake up one morning to find out that he is gone. I have not slept in my own bed since my son came home, i really don't sleep and when i do some one has to be looking out for him, my son (Damien) is now mentally challenged, his father whom i am now with puts full blame on me for what happen even though he wants my son put into a home, i am so lost right now
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
It was the DOCTORS choice to label the incident as it was labeled. Just because it was stated somewhere that the term "Near Sids" isn't used doesn't meant here isn't some doctor somewhere that uses it.
The term "Crib Death" is said not to be used anymore either but it is by some doctors. A lady at my work's baby was determined to have passed for CRIB DEATH only two years ago. It was never revealed to her that CRIB DEATH and SIDS were the same thing.
Second, ormosen we understand that you should seek support for what you are going through. In no way are we saying what you are going through is not worthy or anything. We are just stating that this is NOT the right support group. Just like it would not be appropriate for someone who lost their mother to be in this group or even someone who lost a baby to miscarriage.. because we have not all been through that so we can not provide support for something we have not been through. Your post indicates that you hate when people don't understand. Well, we don't understand because this community is for people who LOST their babies. We can not be understanding of your situation when its not even close to the same.
And in no way can you even begin to understand what we are going through. So no one should be comparing what hurts the same or that what we both experienced is comparable to one another.
Please just seek help in the places I mentioned before and leave the group. There has never been this much negativity in this group and we are not going to be able to provide you the support your seeking.
By definition, SIDS babies died, and could not be revived (if there was a chance to try).
By definition, ALTE (apparent life-threatening event) babies, also called apnea of infancy or babies with unexplained apnea, did not die, and were able to be revived.
The terms "Near-miss SIDS", "Near SIDS", and "Aborted SIDS" have been used in the past, and refer to ALTE. These terms are not preferred now because they imply that if someone had not come along (by chance) to resuscitate an ALTE baby, the baby would have gone on to die. For those of you who may have witnessed an ALTE, they are frightening to the observer, who often 'believes' that the baby is in the process of dying. However, many ALTE babies have a number of episodes, which they manage to survive, sometimes even before they receive treatment, such as a home monitor. SIDS babies, on the other hand, rarely had apneas observed prior to death, and death is usually the first sign of any "problem". Therefore, I believe that the two populations are generally different, but possibly similar. The relationship might best be described as two overlapping circles, with the area of overlap being small. Some SIDS babies had apneas observed prior to death, though the percent is very small. Some ALTE babies will go on to die from "SIDS" (sudden death, no cause at autopsy), though the percent is small, even if they are not treated.
Doctor Guntheroth's other point, however, may be valid. If one wishes to study physiology, that is the way babies' organ systems behave, you need to study living babies. You can not do physiology on SIDS victims. So, which babies do you study? Many researchers, including our group, take babies who are statistically at high risk for SIDS, and compare various responses to low risk babies (controls). We have also used ALTE babies in many of these studies. This is not to say that ALTE = SIDS. But, rather, it says that these babies may have some similarities to the way SIDS babies would have behaved, and study of them might give us insights into SIDS. Everyone who does this type of research is acutely aware that we are not really studying SIDS, but only babies who we think might act like SIDS babies would have acted if they were alive.
Thank you.
Willow
dont think for one moment that i dont feel any of you pain as i have lost a child in the recent months but this is my post and i will respond to it i never asked anyone to read id i was reaching out at the time of it and i received so much negative response from it that it only hurt me instead of helping me get threw any of it, i would love to spend one more day with my little girl who past away put i cant and i know that, she will forever be in my heart so please dont read or post to this if you got nothing helpful to stay, going threw a near expearance even though our kids are still here is hard and the after affects the wondering is extreamly hard to do, my son is going to be 5 now and his health is getting worse every year that goes by and all the dr.s say i can do is wait till his time, so every morning i get up and try to be ok when all i get to do is watch my son die and that kills me most of all, he is sleeping right now i can only be so lucky for him to wake up, but i still need support too, and just maybe ppl who have gone threw it would have been willing to help as one day i know i will be going threw it but only diff is I get to do it alone
if there is a group that fits your needs better, please post to that group. you are hurting too many ppl over the years with this post of yours. the bottom line is - IT IS HURTING PEOPLE! i can only come to conclusion that people like you enjoy others' suffering. that is very selfish and unnecessary in this group.
we cannot relate to your experience anyway, and you cannot relate to ours, as we did not have the same things happen. it's different. we do not have enough strength ourselves to council someone that we cannot relate. this is the place of exchange of the mutual feelings due to SIDS deaths.
you come across very selfish, as it seems you could care less that your posts hurt people who are grieving their dead children. it is, indeed, very cruel too. that's what you are.
stay within your group.
I also wanted to remind you all of how much I really care about each of you. I don't know what I would do without this group, you all have made such an impact in my life. I never dreamed people I had never met, that lived across the country from me, would actually care enough to to randomly check to see if I was ok, or take the time to read what I write, it is truly an amazing thing, and something I am so grateful for. Don't let anyone's ignorance or lack of empathy hurt you, we have all lived through the worst a person can experience, it would do our children a disservice to let trivial people cause us pain. Hugs!