I feel lost. Most of all I feel like screaming. It been a little over 3 years since my precious Kaitlyn got her wings and I use to think that time heals but now I realize that the passing of the time makes you more aware that you cannot alter, nor change what has happened. You are just stuck, left dealing with the loss of your baby and nothing on Gods green earth can fix nor change that fact. I am so angry, and hurt. I feel empty most of the time. Like a part of me is missing and like I will never be whole again. I want answers! I want to know WHY??? I want to know why people are so scared to speak of SIDS. They don't want to scare new parents, better to scare them then to have to deal with the aftermath. I just wish this was all a nightmare and I would wake up and there would be my healthy, happy 4 1/2 month old baby girl. With her big blue eyes and that beautiful smile she would always give. I miss my daughter with everything in me and I want people to know the risks of SIDS. I think it needs to be recognized just as much as AIDS and Cancer are in this world. I will always be a mommy to a beautiful baby girl! and her big sister Hailee will always have a baby sister and an angel.

Kim,
Mommy to Angel
Kaitlyn Michelle
www.kaitlyn-edge.memory-of.com

after of almost of seven years passing since jessica died i find myself still waiting for so many things ..... the desperation of wanting her home and tormenting of knowing she was taken and nobody can tell me why...no closure as of yet just speculations so i also am waiting on answers. i agree with lots of things the previous comments said i feel those ways to .. i to found my daughter on georgia site and it backset me quite a bit but i know how important this info is. i know the educating is also needed desperately and the only voice our children have is through us although it is tough at times to relive it i just dont want my daughter to have died in vain. i hope this research comes up with some answers for us all so we can have closure. i still desperately want to know why my daughter died and that will not go away without answers

Wow! What an emotional roller coaster! I must say that I am excited after reading your study. I know that might sound strange because my daughter died of SIDS, but I'm excited because you have the ability to reach a massive amount of people and you took the time to learn about SIDS. All too often journalists and media sources just assume that babies will not die if they are put on their backs to sleep. I can't tell you how many times I've read articles that begin, "It is the most preventable of deaths, yet SIDS still happens." Those individuals make me feel horrible. Thank you for caring enough to research SIDS and to think about how the presentation of your study will make the parents and caregivers of SIDS babies feel.

As excited as I am, I must admit that I am also taken back. My daughter died in 2002. Her statistics are included in your database and when I found them, it threw me off-guard. You'd think that after 5 years, I would have accepted her death, but to see her statistics - I just can't believe she's a statistic. It's not fair! I continued to drill the database down to my county and looked over all the deaths you've included. I am shocked at how many SIDS deaths have occurred in my county - almost one per month. I remember the funeral director telling us that the coroner suspected SIDS, but wouldn't not say for sure until after all tests had been run. Based on the number of cases listed as SIDS, it seems he wasn't afraid to use it - which means he wasn't afraid to admit that he tried his best, but couldn't figure out what went wrong.

Thanks again for your dedication to this study and your open-mindedness. Thank you for not suggesting that SIDS is "simple" or "preventable". And, thank you for bringing the unfortunate reality of misclassifications of infant deaths to light. Please continue to help us spread awareness of SIDS. Perhaps with your help, the rest of my children will not have to worry about SIDS.

My grandson died last April 2006 at the age of 2 months and we are still reeling from the shock of his death. We still don't understand why he died. He died in Oklahoma and I haven't seen the death certificate but my daughter-in-law said they told her it was SIDS. He was perfectly healthy, although he was a few weeks premature. He was a twin and was the smaller of the two. There is so little interest and research into SIDS. A big deal has been made over the "Back to Sleep" campaign and also the news that the SIDS rate has gone down since the campaign began. Now I read that since there is no national standard for reporting unexplained infant deaths, that many infants deaths have simply been shifted to another category. Thus the decrease in SIDS deaths!!

My son had bad reflux, and at age 5 months his pediatrician said it was okay to let him sleep on his tummy--the reflux troubled him less and he slept much better in that position. Within days of her giving us permission to let him sleep prone, he passed away. We'll never know if there was a connection there. He had also received 3 shots that day (two of which were combos, so it was like 5 shots), which was alot to load up a former preemie with at once. He had a bad reaction to the shots, so perhaps that contributed to his death.

Nevertheless, there was a medical reason why we were not participating in the "Back to Sleep" campaign. I'm sure there are other families doing the same thing for the same reason, sanctioned by their doctors. And I'm tired of hearing "Back to Sleep/Back to Sleep/Back to Sleep"--it's like being hit on the head with a sledgehammer. We had, we thought, a good reason not to put Matt to sleep on his back, and we thought we were past the highest risk for SIDS. And we had a child who desperately needed some rest (and so did his parents).

I know that some parents don't want to give up letting their babies tummy-sleep because the babies will wake more often on their backs. True, the waking may be nature's "alarm system," triggered by a baby who momentarily stopped breathing and needed to wake and cry to get oxygen into his lungs. But parents don't know that. They only know that they're exhausted, and that each time the baby wakes, their chances of staying functional the next day go down. I don't see First Candle, the NIH, or anyone else stepping in to help parents who are getting less rest now that they are supposed to exclusively put their children to sleep on their backs for the first year. How about more support on the grass-roots level, in the home, where parents really need it? That might make moms and dads more willing and able to carry out the advice that is supposed to benefit their children. Get them some home child care help, and give them paid leave so they can care for their children during those months when they're too zombified to be doing a fulltime paid job outside the home anyway. ("Sleep when the baby sleeps" is meaningless unless your boss lets you move a sofa into your cubicle.) Someone has to help parents help their children! Simply talking at them doesn't work.

I'm angry that there is not more SIDS awareness. I'm angry that there still are not standard procedures in place nationwide for investigating infant deaths. I'm angry that thousands of babies are dying each year from SIDS and the deaths are trying to be swept under the rug. And above all, I'm scared! I'm scared for the survival of every baby born. And I'm scared that I will lose another child from the same unknown cause because the research is not being done to find out WHY these babies are dying or how to keep it from happening again. And I'm tired of feeling the judging glares from people when they hear that I lost a baby to SIDS because so many people are still so miseducated and still wonder why I didn't just do these simple things to keep him from dying!

So, that's how I'm feeling! Thanks for giving me the chance to let you know!

Cathy
Mommy to an angel, John Daniel Fry (3/19-6/14/98)
and also to Joseph John McDonald 12/26/05

I lost my 4th son Christopher to SIDS (then called crib death) in 1972. It took me years to get past the pain and fear that another of my children could be taken. When my first Grandson was born I missed out on much of the joy of those early months for fear that SIDS would strike again. I had hoped that by the time my Grandchildren were born SIDS would be unheard of, however, that is not the case. Now my hope is that when my Grandchildren have children they will not have to worry about this silent killer of little ones. Even all these years later I am still affected by SIDS ~ my heart breaks for those that suffer such a loss because I know their pain. We need an answer, we need to have the public realize that SIDS is REAL and that all those affected by SIDS deserve to have an answer to their frequent question 'why?'.

My son has been gone for almost SEVEN years now....he died on the morning of his Christening and it took me years to get my brain in working order again.
The best way to describe the shock of his loss, is that the world came off its axis and nothing was as it should be.
But as the years have gone by, by far the most hurtful and frustrating thing has been the media's disinterest in SIDS and reporting the facts.
They seem to prefer reporting 'scandal', 'murder', 'parent neglect' etc..that may originate with the word SIDS. But suddenly the story will become something else, but the public will always make the link of SIDS to something that simply does not happen, but is used to hide a murder or suffocation.

Sudden Death really does happen, and it continues to happen into adulthood albeit less frequently. But to me, these are all related and should be treated as such.
Marta
Joey's mommy